Category Archives: Stem Cell Doctors

Docs said our toddler was just clingy but we learned the truth on Google it was cancer – The Sun

WHEN Laura Farmer-Maia's daughter suddenly became clingy and unhappy, she initially brushed it off as nothing but "a phase".

And given little Beatriz was just three-years-old, the last thing to cross her mind was cancer.

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Yet, months after doctors repeatedly dismissed the symptoms as clinginess, the diagnosis was confirmed - Beatriz had an aggressive childhood cancer known as a neuroblastoma.

The horrifying news came after Beatriz's father Tiago Maia refused to leave the hospital after discovering the potential diagnosis himself on Google.

Shocked, Laura, 39, and Tiago, 40, are now urging all parents to be vigilant and check their kids for signs of the disease.

The mum, who works in advertising, first suspected something was wrong last July, when Beatriz's behaviour dramatically changed.

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She said: "Before she was diagnosed, Beatriz was quite naughty but when she reached two, she suddenly became clingy and picky with her food, and had a fever all the time.

"We took her to the GP who believed it was a virus and after recurrent visits they gave her some antibiotics to cover for a potential bacterial cause, which didnt have any effect.

"Beatriz started to complain that her legs hurt so we took her to A&E, where they did some more tests and still said it might be a virus.

"Its hard to get a diagnosis right when a child is too young to explain how theyre feeling, but in the back of our minds we knew it was something bad.

"We want to spread awareness of the difficulty of diagnosing cancer in young children - if your child doesnt seem right, you should push for further tests."

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Tiago pushed the GP for more tests, and blood tests showed something was wrong, so Beatriz was sent urgently to hospital.

It was there medics finally discovered a lump above her kidney and diagnosed her with neuroblastoma in September last year.

The cancer is aggressive and has a 40 per cent chance of long-term survival.

Everything moved so quickly and we all felt frightened as they carried out the tests

Tiago, originally from Portugal, added: "At the hospital, they twice said it was likely to be a virus and I refused to leave until I saw a specialist.

"I waited for three hours until a more senior doctor was free, and then Beatriz was examined by different specialists who admitted her to do all kinds of tests and observations including X-rays and ultrasounds - it was the last one that confirmed there was a lump.

"When my fears from Google turned out to be true, it was very strange because even though my life had just flipped upside down, I was almost relieved to be right - it was weird and confusing."

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Beatriz was referred straight to Great Ormond Street Hospital in London, where they carried out further tests including scans, blood tests and biopsies.

She began chemotherapy just a week after being diagnosed and underwent eight gruelling rounds of chemo over the next 18 months.

Doctors then carried out a stem cell transplant to regenerate bone marrow destroyed by high dose chemo, which meant Beatriz couldnt leave the hospital for eight weeks.

Tiago, a design director, said: "I was quite scared when Beatriz was diagnosed because my mum and dad had only recently died from cancer I thought of the worst.

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"Everything moved so quickly and we all felt frightened as they carried out the tests.

"Doctors found that the cancer had spread across her body, so she began chemotherapy just weeks after being diagnosed.

"We were told the treatment would last 18 months which was a massive shock to us.

"A week after Beatriz started chemotherapy she massively improved, but it was tricky being in hospital at first.

"Now, she still has periods of discomfort but sometimes shes happy to be in hospital because she has toys and people to come and play with her."

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Laura added: "The stem cell transplant was a hard time for us all because we had to spend a lot of time apart from our other daughter, Clara, six.

"Beatriz was diagnosed in Claras first week of school and it was difficult because that was supposed to be an exciting time for her."

After more scans and hopes of an all-clear, doctors found more metastatic growths still remaining in Beatrizs head, which meant that the cancer hadnt fully cleared up and she had relapsed.

The brave youngster is now undergoing immunotherapy and is due to start a six month medical trial on the NHS at Great Ormond Street Hospital, called the Beacon Trial.

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What is neuroblastoma?

Neuroblastoma is a type of cancer that most commonly afflicts babies and young children.

The disease develops from special nerve cells, known as neuroblasts, which get left behind from the child's development in the womb.

It mostly begins in the sufferer's adrenal glands located above the kidneys but can occur in the nerve tissue that runs along the spinal cord in the neck, chest, abdomen or pelvis.

The vicious illness can then spread to other organs like the bone, bone marrow, lymph nodes and skin.

Neuroblastoma afflicts around 100 children a year in the UK but the cause of the disease is still not known.

Its symptoms can include:

It is uncertain whether the trial will work and, even if Beatriz goes into remission, relapse rates are high but her parents are determined to do everything they can to stop the cancer from returning.

Laura and Tiago are now trying to raise 200,000 to help get their daughter into remission or to keep the cancer away if her treatment goes well.

The money is hoped to go towards further treatment, or if Beatriz gets the all-clear, a special vaccine in New York which helps keep the disease away.

Laura said: "After the stem cell transplant, the end was almost in sight but then she relapsed.

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"Were afraid that the cancer will get worse and worse and want to raise money to help get her into remission the ideal outcome is that the trial works and clears the disease.

"Luckily, compared to other two-year-olds, Beatriz has suffered less side effects with treatment and despite losing her curly hair shes powering through."

You can donate on Beatriz's JustGiving page here.

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Docs said our toddler was just clingy but we learned the truth on Google it was cancer - The Sun

Family’s tribute to ‘brave and loving’ Oliver Brown who has died aged 11 – Devon Live

The heartbroken parents of 11-year-old Oliver Brown have described their son as loving, cheeky, braveand unique, less than a day after he lost his battle with a rare form of blood cancer.

Mike and Nicola Brown from Plymstock said Oliver passed away at Little Harbour childrens hospice in St Austell on Saturday evening surrounded by his family, including eight-year-old brother Benjamin.

Oliver has spent the last three years being treated for a blood cancer that is so rare, it affects only four in one million children worldwide.

Nicky said: He was adored by anyonewho ever met him,he was unique. They broke the mould when they gave us Oliver. He was loving, cheeky, compassionate, brave, andwas reallycontentedwith who he was as an individual.He had a real zest for life.

Oliver was diagnosed with Myelodsplastic Syndrome at Bristol Childrens Hospital towards the end of 2016, which he had developed as a result of a complicated genetic disorder relating to his GATA2 gene that also led to him being born deaf.

The Goosewell Academy pupil spent the last three years facingintense and invasivetreatment,over 15operations, time in isolation and two 5.5 month stints in Bristol Childrens Hospital.

In May, the family were told there was nothing more doctors could do, and that he would only have weeks to live.

But true to his personality, Oliver amazingly defied the odds and continued battling, and living life to the fullest he could for another five months.

Mike said: He was born with a natural ability to make people warm to him. People smiled when they saw him and when they left him they wouldnt forget him.

The things that set him above anyone else was his sense of humour and his compassion - his ability to deal with stuff. He could go back to a place and people would remember him. He had a very memorable personality.

After the initial diagnosis, the family were told Oliver needed a stem cell transplant. Benjamin was not a match so a donor was found and the procedure went ahead in January 2017 following intense chemotherapy. He was then in isolation for seven weeks in Bristol with only four named people allowed into his room - that didnt include Benjamin as he was too young.

Nicola stayed with him all week, then Mike and Benjamin did the 2.5 hour journey every Friday from Plymouth. The brothers would talk through the window via walkie talkies, and Mike would then stay with Oliver whilst Nicola spent the weekend in Bristol with Benjamin, staying in CLIC Sargent accommodation called Sams House.

After 5.5 months of treatment, Oliver and Nicola returned to Plymouth in May 2017. He was taught at home until the October half term after which he went back to his beloved friends at school. They had kept in touch whilst he was away by Skyping his hospital room.

Just before Easter 2018, Nicola and Mike noticed Oliver was becoming tired more easily again, and after further tests the family were given the news theyd been dreading. The Myelodysplasia was back.

A second transplant was arranged, this time using stem cells taken from a donated umbilical cord, but the cancer was advancing faster than previously and another bone marrow biopsy brought the horrendous news that Oliver had borderline acute myeloid leukaemia, and it was unknown whether a second transplant was advisable.

It was decided Oliver would have even more chemotherapy and the second transplanteventuallywent ahead in August 2018. He was hospitalised for a further few months, not returning to Plymouth until November.

He had his feeding tube and Hickman line used to give him medication removed in April 2019, but developed shingles within a month and was back in hospital. Just 10 days later on May 23, 2019, the family were told the devastating news - the second transplant hadnt worked, the Myelodysplasia was back, and there was nothing more doctors could do.

Nicola said: He has undergone so much, far more than any adult would expect to go through in their entire life. He was born deaf and his whole life has revolved around hospitals. We cannot sing the praises of the NHS enough.Everyone who has been involved in Olivers treatment, particularly over the last 3 years, has been exceptional. The levels of care, compassion and support for not just Oliver, but us as a family, has made this so much easier to live through.

Since May, Oliver had more chemotherapy to slow the development of the blast cells within his blood, and lots of blood and platelet transfusions, but the cancer spread.

So the family decided to have as much fun as possible with Oliver whilst he was well enough - to give him amazing experiences, and to provide Benjamin with memories of his brother that would last a lifetime.

Charities and generous local people who heard about Oliver rallied round, and the family spent the last few months making the most of their time together. Experiences included a treehouse at Center Parcs, visits to Legoland, Longleat, Harry Potter Studios, deer spotting at Bovey Castle, a trip on a luxury Princess Yachts vessel, doing the zip line at the Eden Project, hosting his own radio show, presenting the news during a tour of local BBC studios and completing a young drivers experience.

He was taken for a ride in a helicopter, took part in a mass motorcycle ride, and a Volkswagen cruise, as well as meeting the Devon Air Ambulance team, going out on the RNLI lifeboat, being a fireman for the day, spending time on his Year 6 school residential, and meeting players and the coach at an Exeter Chiefs rugby match.

But best of all, according to Mike, was when the family spent the day with Devon and Cornwall Police, because Oliver had always wanted to be a policeman.

Mike said: The biggest highlight was the day we spent with Devon and Cornwall Police. We knew how much it meant tobothboys. It was the unexpected nature of it. It went from a look around a police car to a remarkable day hosted by genuine people, it was just amazing.

Its been remarkable the amount of people that have offered what they can as a gesture of kindness. Its given Oliver some exciting moments, and given Benjamin memories for life.

And one of Olivers favourite places to return to each time he got out of hospital was Plymouths West Hoe Park - where he became friends with Jan and Shelley who run it and would help them out on the Gus Honeybun train, the bouncy castle or the kiosk.

Mike said: He always wanted to help others, he just loved it. And he loved West Hoe Park. It was his go-to place during the last three years.

He added: Oliver took the last three years in his stride. He absorbed it all and made it easy for everyone else around him. If someone asked him how he was, he would always say he was fine,despite talking with us how tough he was finding it.

Nicola said Oliver was a thrillseeker and some of the experiences the family had since being told he didnt have long to live have been incredible.

She said: He was such a thrill seeker. He was the one that got me on the high ropes at Center Parcs and the zip wire at Eden. I would never have done any of it. But the fact I did it with him wasa really special moment.

He had a real zest for life. We have done things because of him that we would never have had the opportunity to do. He was always up for trying new things and was the first to volunteer for something.

Nicola said Oliver also had a real sense of fairness and equality - choosing to support one side during the first half of a rugby match, then the other team during the second half, to keep things fair.

She said: His sense of fairness and equality played a big part in everyday life. He would always make sure games were played by the rules. He was a stickler for the rulebook. He would always want to be the referee in any games as he was somewhat clumsy when it came to sport!

Oliver was interested in current affairs and would watch BBC Breakfast News every day - once writing a list of things he wanted to see happen in the world including Donald Trump banning guns, more NHS beds and litter patrols on beaches.

He was voted to be an eco warrior at school, meaning he had to attend meetings and put forward ideas on how the school could improve and be more environmentally friendly.

Nicola said: He was very much like his Dad - very happy to have a laugh and a joke but cared deeply about things that matter and things that affect other people. From a really young age he was really empathetic.

He was very true to himself, he didnt follow trends, he was never influenced by anybody else. He was unique and very contented.

He had a real willingness to smile and engage with people, and that set him apart from anyone else. Even going back to that dustbin story when he was just three.

The Herald reported back in 2010 how the men who operated the bin lorries in his street gave him a Christmas present, after he would go out and see them do their rounds every single week.

Nicola added: He pushed the boundaries in a comedic, jokey, cheeky way as a young child, whichwas one of the main reasons that he was able to work his way into the hearts of everyone he met.

Last week Plymouth Live reported how the family had already put up their Christmas decorations because they knew Oliver wouldnt be here to experience it in December.

They have lights across the front of their house, illuminated snowmen in the garden, a Christmas tree up, decorations including a life-size singing Santa, and a Lego Winter Village complete with moving train.

Mike said: Oliver had a real love of Christmas, hence why we did it. He genuinely adored Christmas and we knew that he wouldnt be here this year to experienceit. And really, what the hell does it matter how early it all goes up.

One of Benjamins wishes was that Oliver was here for Christmas and that if he couldnt be, he wanted him here to put up the decorations. We wanted to make that happen so he could experience Christmas one last time together.

In September Mike and five of his friends took part in the One Pedal At A Time cycle challenge from Lands End to Bristol to raise money for the Wallace and Gromit Grand Appeal which supports Bristol Childrens Hospital. They raised a staggering 16,500.

Olivers funeral will be private but the family are planning to arrange a Celebration of Life service at a later date for everyone to attend.

Nicola said: Whatever Oliver has faced in life he has done with a smile on his face and love in his heart. There has been more laughter than tears in the last three years and we want to remember Oliver like that.

To make a donation to Little Harbour childrens hospice in St Austell visit this fundraising page.

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Family's tribute to 'brave and loving' Oliver Brown who has died aged 11 - Devon Live

In June, FDA announced a patient died from a fecal transplant. Now the doctors are speaking out. – The Daily Briefing

Doctors from the hospital that treated a patient who died after a fecal microbiota transplant published a case study on Wednesday in the New England Journal of Medicine that offers more details on the case as well as another case in which a patient became severely ill from the procedure.

How to eradicate antibiotic overuse

FDA announced in June that it had become aware that patients who undergo FMT can experience severe or life-threatening bacterial infections caused by drug-resistant bacteria. FDA said two patients with weakened immune systems who received FMT developed infections stemming from extended-spectrum-beta-lactamase (ESBL) producing E. coli, which is resistant to antibiotics. FDA reported that one of those patients had died.

FDA said both FMTs involved stool from the same donor. The donor's stool had not been tested for ESBL-producing gram-negative organisms before the providers conducted the transplants, according to FDA.

FDA said the donor's stool underwent lab tests after the two patients experienced adverse reactions, and the tests confirmed the stored stool contained ESBL-producingE. coliidentical to the bacteria found in stool used in the two transplants.

As a result of the developments, FDA issued new safety guidelines for FMTs, saying it would now require FMTs to involve:

FDA did not provide many details on the two cases, which led doctors from Massachusetts General Hospital, where the patients were treated, to issue a report detailing the cases. Elizabeth Hohmann, co-author of the report and associate professor of medicine and infectious diseases at Mass General and Harvard Medical School, said, "We wanted to set the record straight."

According to the report, both patients were involved in clinical trials to see if FMTs could be used as a potential therapy for their conditions. One patient was in a trial to learn whether FMTs could help improve brain function in patients with severe liver disease. The other was participating in a trial to see if FMTs could be used to help immune function in leukemia patients who had undergone chemotherapy and stem cell transplants.

Two and a half weeks after doctors administered the final FMT dose to the liver disease patient, a form of E. coli was found in the patient's bloodstream, the report said. The patient recovered after intravenous antibiotics killed the bacteria.

The leukemia patient also developed the same form of drug-resistant E. coli. However, the patient had taken drugs to suppress his immune system as part of a bone marrow transplant and began to decline faster, the report said. Eight days after his last FMT dose, the patient was placed on a ventilator, and two days later the patient died from a severe bloodstream infection, according to the report.

Upon investigation of the liver patient's infection, doctors discovered that the stool sample used for the FMT contained the drug-resistant organism.

According to Hohmann, the stool donor was "what I call a 'screamingly healthy person.' Only about one in 40 people who think they might be healthy enough to [donate stool] actually turn out to meet all of our criteria. [The donor] had none of the 'risk factors' for carrying these organisms. They could not recall the last time they received antibiotics, had zero medical history, no international travel. Plus, they completed all of the other screening tests."

The doctors had been following FDA protocol testing stool donations for infectious bugs, but were not instructed by FDA to test or destroy older stool samples kept in storage, Hohmann said. The stool sample that sickened the two patients in the report had been stored in a freezer for several months.

"It wasn't obvious to a lot of smart people here," Hohmann said. "We didn't think to go back in time."

Hohmann said the report should serve as "a cautionary and sad tale. It points out some of the important medical issues about immune-compromised [patients] and maybe that changing the microbiome is not always a good idea."

Alexander Khoruts, a professor of medicine and medical director of the Microbiota Therapeutics Program at the University of Minnesota who was not involved in the report, said the report should "set off alarm bells for those who thought that [FMTs were] risk free." He added that Mass General "did the right thing" by sharing details and that he hopes the report will lead doctors to be more cautious.

Stuart Johnson, an associate professor of medicine at Loyola University Stritch School of Medicine, who specializes in the bacterial gut infection Clostridium difficile, said he thinks the report "points out that we don't know everything that's in someone's feces, and I think widespread adoption of this practice is problematic" (Carroll, NBC News, 10/30; Jacobs, New York Times, 10/30; Smith, Medium, 10/30).

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In June, FDA announced a patient died from a fecal transplant. Now the doctors are speaking out. - The Daily Briefing

‘Any One of Us’ Is More Than an Inspirational Film – Outside

The first time I watched the documentary Any One of Us was about four months before my fianc, Andrew Bernstein, was hit by a van and very nearly killed while riding his bike.

At the time, I was working on a feature story for Bicycling about professional mountain biker Paul Basagoitia, who had sustained a spinal-cord injury in 2015 at Red Bull Rampage, the sports most extreme competition. At the age of 29, Paulwas paralyzed below the waist, and doctors gave him a 5percent chance of walking again. Three and a half years later, Id seen on his Instagram that he was riding an e-mountain bike. When we started talking in February, Paul told me he was releasing a film with Red Bull about his journey. The documentary, called Any One of Us, would premiere in March at the SXSW Film Festival. In February, Andrew and I watched a screener together one Friday night on the couch, my notebook in my lap, our cat curled up in his. By the end of the film, I was crying, rocked not only by Pauls storybut that of the 17 other people in the film who share their honest perspective on what it is like to live with paralysis. A few weeks after that, I went to visit Paul in Reno, Nevada. I filed adraft of my piecein April. I hoped his story would inspire people. I hoped it would remind them to be grateful for what they have, to appreciate how instantaneously it can all go away.

In July, someone driving a cargo van hit Andrew while he was riding his bike home on a country road outside Boulder, Colorado. The driver fled the scene, leaving Andrew in a ditch with over 30 broken bones (including every rib), collapsed lungs, life-threatening internal bleeding from a shattered pelvis, andthough we wouldnt know at firsta spinal-cord injury (SCI). It would paralyze his left leg and disrupt his bowel and bladder functions. In September, after two months of intensive and acute hospitalization, Andrew ended up at Craig Hospital, the same nationally renowned SCI rehab facility in Denver that had treated Paul. We would not come home until October. Any One of Us would debut on HBO two weeks later, on October 29.

The strangeness of the parallel is undeniable. At first I felt sick thinking this could be karmicthat by making Paul revisit the most traumatic moments of his life, by capitalizing (even with good intentions) on his ordeal, I had brought this upon us. A good friend of mine had a more optimistic takethat meeting Paul had prepared us. The most likely reality is neither: This was simply a coincidence. This could happen to youor me.

As the films title belies, thats one of its main messages: a spinal-cord injury couldhappen to anyone. The narrative of Any One of Us follows the fallout of Pauls injury over two years. The first halfwas actually filmed by Paul himself, who hassome videography background and had the remarkable prescience to turn the camera on himself, almost from day one. But first-time director Fernando Villena uses a unique filmmaking technique to powerful effect: introducing what Villena calls a chorusof 17 other people who share their experiences with SCI throughout the documentary. At the moment of Pauls injury, which was recorded not only by Rampages live broadcastbut also on Pauls own GoPro, members of the chorus chimein with their own stories of the incidents that left them in wheelchairs: Caught by a wave while surfing. Botched epidural. BMX crash. Car accident. Knocked over while playing basketball.

Villena and Basagoitiawanted the film to be bigger than the story of one professional athlete. The National Spinal Cord and Injury Statistical Center estimates that 17,700 people in the U.S. suffer new spinal-cord injuries every yearand 288,000 people live with anSCI. The inclusion of the chorus creates the effect of describing a collective SCI experience. The wheelchair-bound individuals speak with clarity and courage about various aspects of the injuryfrom what happened to their sex lives, to the feeling of being in the way or an inconvenience to others, to their defiance at the idea that their value as a human being has somehow changed just because theyre in a wheelchair. I hated my fiance seeing me, says Olympic BMX racer Sam Willoughby.

I wanted to die. I didnt see how I could continue living like that. Or like this, says Steph Aiello, who was injured in a car accident.

Basagoitia himself reveals, Before this injury, I always said I would probably take my life if I was ever paralyzed. Its a sentiment that, even watching the film the first time, hit home. Particularly for active people, the idea of waking up paralyzed is, to borrow Pauls word, a nightmare. Paul had been one of the best professional slopestyle and freeride mountain bikers in the world. At age 17, he entered the inaugural edition of Crankworx, now the worlds premierslopestyle competition, on a lark, riding a borrowed bike. Against the best pros in the world, he won. The next year, he won again. Scenes from his recovery, as he relearns how to do basic things like transfer into a car from his wheelchair and walk haltingly on parallel bars, are juxtaposed with scenes from his career: Paul spinning in the air, doing a 360;Paul spraying himself with champagne on the podium;Paul shirtless, hanging jubilantly out of the drivers seat of a trophy truck he won in Germany(hed sell it the next day: There was no way I was getting that thing back to the U.S., he laughed, when he told me the story in Reno).

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In the hospital, I thought of Paul as I watched my fianc struggle with stairs for the first time after his injury, leaning on a handrail and laboriously placing his left leg, stiff and heavy in its metal brace, on each step. Andrew and I are both cyclists. We rode our bikes five to seven days a week. An elite-level track and road racer, Andrew had always been one of the strongest guys on the group ride. When I was tired, I would sit in the generous draft forged by his six-foot-threeframe, and he would pull me home. In the early days in the ICU, when we knew about his injury but he was too delirious and doped up on pain medications to yet be told, he had still somehow known. One night, after his brother, Eric,and I left the hospital, he texted us, Remember, I used to be a good bike racer.

I wanted to scream.

In Reno, Pauls then girlfriend andnow fiance, Nichole Munk, had told me that she did not cry throughout the three months that Paul was in hospitals. If that sounds unbelievable to you, it wont be once you watch the film, throughout which it becomes apparent that Nichole is an extraordinary human beingand one uncannily equipped to support Paul through his ordeal. Theres a moment in particular in Any One of Us that Paul and Nichole told me got a lot of surprised reactions from people during screenings: After a visit from his father in the hospital, Paul gets emotionaland starts choking up as he talks about it. Instead of cooing over him, Nichole tells him to toughen up.

Its a jarring interactionand one that flies in the face of our preconceptions of how women are supposed to be caretakers: soft and endlessly nurturing. And yet, a few minutes later, Nicholewho started dating Paul while she was cheerleading for the University of Nevada, Renois dancing in his wheelchair, laughing, an infectious smile on her face. And hes laughing, too. I have to be positive so he can be happy, she says in a voice-over. I have to be the rock. Munk does not embody the performative sympathy we think someone in that position might want; she is the constant source of no-bullshit straight talk, relentless positivity, and unshakable love that Paul Basagoitia actually needs. A year later, as the two of them argue over whether he should try fetal-stem-cell therapy, Nichole tells him, Youre not a very pleasant person to be around right now. They offer a real, unvarnished look at what it takes to be a partner and caregiver during this kind of life-altering ordeal.

Andrews injury has become the sun around which we orbit. It has its own gravitational pull, which overpowers that of the minor planets our lives used to revolve around: our bikes, our careers, our friends, our families. After July 20, life became a sleep-deprived blur of commuting up and down a traffic-choked interstate, days and nights spent in hospitals, and, once I went back to work, struggling to reintegrate into a new job Id just started three weeks before his crash. It was, plainly put, exhausting. I could sense, on a few occasions, that when friends and family dropped in on us, they thought I could be more dotingnicer, more attentive, fussing over him more. But as Andrew has gotten more self-sufficienthe spends most of his day in a wheelchairbut can walk short distances on forearm crutcheshe doesnt need someone to hover over himor shield him from the hard emotional work of making the best of this shitty situation. He needs someone to scrape the snow off his car early in the morning so he can get to PT, to carry the bags back in from the grocery store, and to call him out or make him smile or do both at the same time so he can self-arrest during the inevitable slides into darkness. He doesnt need a nurse. He needs a partner.

Since Andrews injury, I have thought of Nichole Munk often. In my mind, shes an example of what it means to be the support someone needs, not just the support everyone expects you to be. We should all hope to have and be the kind of partner she is.

At its core, this movie is an instructional. But for whom? The genre of disability stories too easily falls into the trap of inspiration porn for an able-bodied audience. Butfrom the first clips Paul took in the hospital, Any One of Us didnt begin as a documentary for the rest of us. In a way, it often feels like a conversation between people living with an SCI. We are allowed in to listen, watch, and learn.

When Basagoitia started filming himself, he told me, he didnt know what he was going to do with the footage. He just had the sense that his experience might one day help others going through the same thing. As early as the day he got his staples out from his back surgery, a couple of weeks after his crash, he said into the camera, I just hope this can be a guide for someone else. One of the most challenging aspects of a spinal-cord injury is uncertainty. The delicate bundle of nerve fibers that carries messages from your brain to the rest of your body, and which alsoregulates sensory, motor, and autonomic function, is highly susceptible to damageand heals slowly once injured, if at all. Mostrecovery takes place within 18 months to two years, but the neurological recovery of every person is different, and it is impossible to know what youll regain.

When Paul began collaborating with Villena and Red Bull, the intentions for the film became twofoldto be a field manual for people living with an SCIand to raise awareness about their experience. Awareness leads to interest, which leads to funding for a curewhich doesnt currently exist for spinal-cord injuries, though some experimental therapies have shown promise. Until now, awareness has been critically lacking, Basagoitia told me in Reno. Since the late actor Christopher Reeve, who suffered an SCI while horseback riding, passed in 2004, the popular media has largely overlooked it. Any One of Us was just one of two feature-length documentaries I could find online about the topic. (The other was Coming to My Senses, released in 2018.)

Basagoitia holds nothing back in educating viewers about the reality of an SCI. One of the rawest scenes of the film shows Paul nude in front of the hospital toilet in the middle of the night, inserting a catheter to urinate. It takes him over seven minutes. There is footage of Nichole helping him bathe. Its a searingly honest look into what people with an SCI endure on a daily basis. But it must also be said that both Paul and Andrew were relatively fortunate; both were paralyzed below the waist, with incomplete injuriestheir cords were not totally severed. Those with complete injuries face a life of paralysis with little hope of significant recovery. At Craig Hospital, Andrew and I also interacted with quadriplegic patients, some of whom were learning to control powered wheelchairs using their breath. In one scene, after he arrives at Craig, Paul tells the camera somberly, Theres not one person here at the hospital who isnt in a wheelchair.In fact, theres a lot of people who are in worse situations.

As the film follows Paul through his recovery, the viewer comes to relate with the experience of finding triumph in the smallest victoriesa feeling Andrew and I have come to know well. Hewould text me to tell me a new muscle strand had started twitchingor that he had stood for a full 30 seconds on his own. But there are big wins, too. Villena selected an impressive group to represent the chorus: author Annette Ross, who wrote a memoir after her injury; Chelsie Hill, who started a wheelchair dance team; Jesse Billauer, who became the adaptive world champion ofsurfing in 2015. As for Paul, he makes his way back onto the bike about a year after his injury. His first ride is captured on film, and his pure joy is palpable.

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These moments, which are paired with a stirring but not overly melodramatic soundtrack, are emotional, but its more than voyeuristic inspiration. Its a shared sense of triumph thats earned after bearing witness to the hardships of this injury. And for anyone living with an SCI, the scenes of those in the chorus walking, playing basketball, dancing, and riding a bike againare a powerful promise that your best days can still lie before you.

Perhaps that is one of the greatest accomplishments of this film, that it manages to speak to both audiences. Andrew and I know this because weve seen the film twice. The first time, we were deeply affected by the experience and determination of this community. We learned that, with resolve, life in a wheelchair could in fact be richer and more beautiful than life before it. We saw that its a defect, a bug coded into our human nature, that we never know how to truly appreciate what we have until we lose it.

The second time we watched the film, two weeks before it aired on HBO and three months after our own SCI journey began, we were searching for the common threads between our story and those of others who had been through it before. This timewe were hunting for clues that would show us the way forward. We cried when we saw them over and over.

Paul Basagoitia wanted to be a guide for how to beat a spinal-cord injury. With Any One of Us, he ended up creating a guide for how to live. This film is more than an inspirational story. It is a testimony. It is a map through hell. It is a gift of hope.

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'Any One of Us' Is More Than an Inspirational Film - Outside

Parents of Thalassemia-affected siblings seek Kochiites assistance – The New Indian Express

By Express News Service

KOCHI:Every parent prays for the well-being of their children. While the prayers of many are answered, there are some who are not so lucky. Yet, they do not lose hope and fight for their childrens lives.Mubarak and Nisha are one such couple which is fighting for the lives of not one but all three of their children.

Faizy, our six-year-old son, was diagnosed with Thalassemia Major, a blood disorder, when he was three-months-old, said Nisha. The couple had been struggling to come to terms with the news when they were dealt another blow.

We neither knew nor expected that Faiha, our five-year-old daughter, would also be diagnosed with the same disorder. She was diagnosed with Thalassemia Major when she was just nine-months-old, she said.For the past six years, the children have been undergoing blood transfusions every 14 days. Our lives revolve around the transfusion dates and the struggle to find the money for the procedures, she said. Her husband, Mubarak, is a driver. He drives a waste collection truck. However, the regular hospital visits mean he has to skip work on many occasions, Nisha said.

Tragedy struck the family again when their third child, a boy, was also diagnosed with the same disorder when he turned one.

The doctors said only a stem cell transplant could save my kids. We got ourselves tested, but I was ruled out and my husbands stem cell was a partial match, she said.She said the doctors have warned against performing surgery with a partially-matched stem cell as it has its dangers. So, we are seeking donors. Everyday is painful for my children. Faizy alone has undergone 100 transfusions till date, she said.

Ramiz Rehman of Smilemakers, Cusat, said time was limited for Faizy. We need a donor as soon as possible. Else, the family will have to use the fathers stem cell. The procedure has to be done in January, said Ramiz.

How to helpTo help the children, Cusats Smilemakers, in association with the Department of Sociology and the NSS unit of St Teresas College as well as Datri (Blood stem cell donors registry), are conducting a blood stem cell donor registration drive on Tuesday at the college.Aby Sam, the state head of Datri, said one registration drive each were held in Changanassery and Mattancherry.

The drive at Mattancherry saw the highest participation with over 3,600 people registering as donors, he said. People believe that blood is checked to identify donors and compatibility. It is not true. A cheek swab is done for the purpose, said Aby.We only examine and register people aged between 18 and 50 years as donors, said Aby, who was the first person in the state to register as a stem cell donor.

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Parents of Thalassemia-affected siblings seek Kochiites assistance - The New Indian Express

Brooks Koepka not in the field at the WGC-HSBC Champions, status of his knee injury remains unclear – Golf Digest

Its unclear the extent of Brooks Koepkas knee injury, but its severe enough to keep him out of another PGA Tour event he originally had planned to play. The No. 1 ranked golfer in the world was not listed among those who will be competing at the WGC-HSBC Champions in China next week when the initial field was released on Friday.

Granted, it was a longshot that Koepka would make another flight back to Asia for the tournament after aggravating his left knee while slipping on wet concrete during the CJ Cup @ Nine Bridges two weeks ago in South Korea. Doctors advised Koepka to return to the United States for further testing, so he withdrew from the CJ Cup after the second round and flew home to Florida. At that time, he also announced that he would miss this weeks Zozo Championship but left the WGC-HSBC up in the air.

Koepka underwent stem-cell treatment in August to repair a partially torn patella tendon in the left knee after finishing tied for third at the Tour Championship. He returned to compete in the Shriners Hospitals for Children Open, missing the cut after rounds of 70-71, and said prior to the CJ Cup, where he was the defending champion, that the knee felt good, although more stem-cell treatment might be in the offing.

RELATED: Brooks Koepka reveals painful treatment on knee'I was screaming'

Suffice to say, Koepkas status moving forward is a curiosity among many people not just part of the four-time major winners inner circle. None more so, perhaps, then U.S. Presidents Cup team captain Tiger Woods. Koepka was an automatic qualifier for the American team that will compete in December at Royal Melbourne. When asked prior to the Zozo Championship about Koepka, Woods said hed been in contact with him and was hopeful that hed be able to return in time to compete in Australia.

Were just waiting to see what the surgeons say and see what his protocols will be going forward. Thats something hell keep me abreast of going forward, Woods said. Hes getting other opinions about where his knee is and what his options are. I went through the same thing with my knee and my back. You want as many opinions as you can before you decide which road you want to go down.

Earlier in the week, Koepkas management team told multiple media outlets it had no more information about the injury.

Suffice it to say, Woods knows from bad knees after coming off surgery on his own left knee in August as well. Given that there are still more than six weeks until the competition, Woods sounded content to wait to see what might happen with time.

Theres no hurry, you are part of the team, Woods said he told Koepka. Now you have to figure out whats best for your career and your knee. If you decide you can play, great. If you cant, I totally understand and well cross that bridge when it comes.

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Brooks Koepka not in the field at the WGC-HSBC Champions, status of his knee injury remains unclear - Golf Digest

Mapi Announces First Patient Enrolled in the Phase III Clinical Trial of GA Depot for Relapsing Multiple Sclerosis (RMS) – BioSpace

NESS ZIONA, Israel, Oct. 28, 2019 (GLOBE NEWSWIRE) -- Mapi Pharma Ltd. announced today that the first patient has been enrolled in its Phase III study with GA Depot for relapsing forms of multiple sclerosis (RMS). Glatiramer acetate, the active material of Copaxone, or its generic forms, is the most common treatment for RMS in the US. GA Depot is a long-acting depot formulation injection of glatiramer acetate administered once every four weeks, compared with the daily or thrice weekly regimen used with Copaxone or its generic forms. In first year of the ongoing Phase II trial for RRMS, 84.6% of the per protocol patient population treated with GA Depot achieved NEDA-3 (No Evidence of Disease Activity, a composite parameter that combines no relapses, no new MRI or enhanced lesions and no confirmed disability progressions). The most advanced patients in that trial have started their sixth year of treatment. Three-year Phase II results were recently presented in September 2019 in the late breaking news session of ECTRIMS 2019 conference at Stockholm.

"Treating RMS is of great importance and there is a significant unmet need for a product such as a long acting Glatiramer Acetate, which has disease modifying potential, and appears safe and well tolerated. The ability to achieve reliable dosing by means of a once monthly dose schedule is expected to ensure adherence to the treatment. We hope the efficacy that was demonstrated in the Phase II study can be confirmed in the on-going Phase III, said the studys Principal Investigator Aaron Miller, MD Medical Director, Corinne Goldsmith Dickinson Center for Multiple Sclerosis, Professor and Vice Chair for Education, Department of Neurology, Icahn School of Medicine at Mount Sinai, New York.

Ehud Marom, CEO and Chairman of Mapi Pharma Ltd., commented, "Our goal is to develop and launch the best drug for MS, and we believe that GA Depot has a compelling profile, combining the safety of Copaxone with better efficacy and the potential for improved compliance. We believe that a product with these attributes will convince doctors, payers and MS patients to select it as a first choice treatment for RMS. Our GA Depot development program is part of Mapis broader strategy to introduce long acting depot injections and other new drugs that provide improved treatment for MS patients.

Mylan President, Rajiv Malik, added, Were pleased to partner with Mapi on this important product for MS patients and look forward to advancing to the Phase III clinical trials. We continue to be encouraged by the success of the scientific program to date and remain committed to bring GA Depot to market at the earliest opportunity.

Phase III Trial DesignThe prospective, multinational, multicenter, randomized, Phase III, double-blind, parallel-group, placebo controlled study is designed to assess the efficacy, safety and tolerability of GA Depot in subjects with relapsing forms of multiple sclerosis (RMS). A total of 960 subjects are planned to be randomized into this study to receive treatment with GA Depot or with matching placebo. During the placebo-controlled period (the first 52 weeks of the study immediately after randomization), subjects will receive either 40mg of GA Depot or matching placebo, via intramuscular injection (IM), once every 4 weeks for a total of 13 doses. Subjects who complete the initial placebo-controlled period will be given the option to continue into the open label period for an additional 52 weeks, in which all subjects will receive 40mg of GA Depot IM once every 4 weeks. The primary endpoint is annualized relapse rate (ARR) derived from the total number of confirmed relapses.

Link to Phase III in clinicaltrials.gov: https://clinicaltrials.gov/ct2/show/NCT04121221

AboutGA DepotGA Depot is a long acting injection version of the approved Glatiramer Acetate (GA, commercially available as Copaxone), designed to be administered as an intramuscular injection once every four weeks. GA Depot is intended to be used for treatment of relapsing forms of multiple sclerosis (RMS), and is currently evaluated in a multinational Phase III clinical study. GA Depot is also currently being tested in Phase II for primary progressive multiple sclerosis (PPMS).

AboutMapi PharmaMapi is aclinical stagepharmaceutical company, engaged in the development of highbarrier-to-entry and highadded-value life cycle management (LCM) products that target large markets and generic drugs that include complex active pharmaceutical ingredients (APIs) and formulations. The GA Depotinjection, administeredonce every four weeks, isthe first in a series of depot long-acting injections in the companys pipeline,for the treatment of MS. The product isa LCM version of Copaxone, which requires injectionsdaily or everyotherday. Mapi Pharma partnered with Mylan N.V. (NASDAQ: MYL) for GA Depot in an agreement under which Mylan was granted an exclusive license to commercialize the GA Depot injection product for relapsing multiple sclerosis.Mapi is built on strong chemical and pharmaceutical R&D capabilities, a deep understanding of the global market and ofregulatory needs. Mapi is headquartered in Israel, withR&D facilities in Israel and China,an API production facility in theNeot-HovavEco Industrial Parkand an aseptic manufacturing and Fill & Finish for injectable Finished Dosage Form facility in Jerusalem. Mapi has a strong IP position, filing numerous patent applications for APIs and formulations. Mapi Pharma was founded by Ehud Marom who serves as Chairman & CEO of Mapi Pharma and Stem Cell Medicine and as the Chairman of Pharma Two B. For more information, please visit:www.mapi-pharma.com.

Contacts:Alex MogleVice President, Corporate DevelopmentMapi Pharma+972 52 6080297alex@mapi-pharma.com

Bob YedidManaging DirectorLifeSci Advisors, LLC646-597-6979bob@LifeSciAdvisors.com

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Mapi Announces First Patient Enrolled in the Phase III Clinical Trial of GA Depot for Relapsing Multiple Sclerosis (RMS) - BioSpace

Baby dies from AML, the same cancer his identical twin has – TODAY

Nicole Duhaney couldnt believe her luck when she learned she was having identical twins.

I felt like had won the lottery, Duhaney, 21, told TODAY Parents. "It was the happiest surprise."

After being pregnant for what felt like an eternity, Duhaney and her boyfriend, Niles Liburd, finally welcomed sons Emre pronounced Em-ree" and Elijah on Dec. 23, 2018.

Our life seemed perfect, the mom from Huddersfield, England, said.

But just three weeks later, Elijah developed a lump on his cheek, and both babies developed colds they couldnt seem to kick. Suddenly, they were projectile vomiting.

Trending stories,celebrity news and all the best of TODAY.

At just 4 months old, Emre and Elijah were both diagnosed with childhood acute myeloid leukemia. The disease, also known as AML, is a type of cancer in which the bone marrow makes a large number of abnormal white blood cells, according to the National Cancer Institute.

Myeloid leukemia is the second most common pediatric blood cancer, but it's still relatively rare. In the United States there are roughly 500 children a year between the ages of 0 and 14 that are diagnosed with AML, according to Dr. Richard Aplenc, a physician-scientist within the Division of Oncology at Children's Hospital of Philadelphia.

Aplenc said it is not surprising that Emre and Elijah were diagnosed at the same time.

"If the twins are identical, then they share the same placenta and the same blood supply, so that leukemic cell goes to the other twin," Aplenc explained. "We know that if leukemia is diagnosed before a year or so, there is 100 percent chance that the other twin will develop it."

Tragically, 10-month-old Elijah passed away at home in Tuesday. Doctors allowed Emre, who is currently undergoing chemotherapy, to leave the hospital so he could say goodbye to his brother.

The love they had for each other was just unbreakable, Duhaney noted. "They didn't like to be separated."

She recalled how Elijah pulled his brother in for a kiss after a recent stem cell transplant.

Elijah was beautiful. Every person he met, he touched their heart," Duhaney said. There were times when I cried and he rubbed my tears away. I wish God took me instead of him.

As Duhaney and Liburd, 26, make funeral arrangements a GoFundMe has been set up to help the couple with expenses they are finding comfort in knowing Elijah took his final breaths at home.

He spent six months of his life in a hospital, Duhaney told TODAY Parents. His final night he was where he wanted to be, with the people who loved him him the most.

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Baby dies from AML, the same cancer his identical twin has - TODAY

Heartbreaking story of leukaemia ‘guinea pig’ children confined to isolation rooms – Mirror Online

Every day ended the same way. Alan Corley kissed his father good night through a pane of glass, then retreated to his hospital bed clinging to his Mr Happy toy for comfort.

Diagnosed with leukaemia when he was five years old, Alan was confined to a cell like isolation room at Westminster Childrens Hospital as the slightest cold or infection could prove fatal.

Dad Andy even had to put on a gown, face mask, and rubber gloves before he could enter. Alans one other friend was the little boy in the next isolation room. That boy was Anthony Nolan.

Despite a global hunt for a bone marrow donor to cure Anthonys rare genetic condition, Wiskott-Aldrich syndrome, he died on October 21, 1979. He was seven-years-old.

His mum Shirleys tireless efforts to save him led to the creation of the bone marrow donor register and the Anthony Nolan charity.

It has since found matching donors for more than 16,000 people in need of a stem cell transplant, many of them kids with leukaemia like Alan.

Neither Alan or Anthony were expected to survive, yet Alan was lucky.

After being a guinea pig for high doses of chemo and radiotherapy he recovered. Alan, 46, from Barrow in Suffolk, says: I recently realised what a key figure Anthony was in my life.

I spent six months in that hospital and much of that time, he was the only person I could see. We would talk and play card games like Twist through the glass. When I was well enough to move to my local hospital, Anthony was alive.

I went back to Westminster a few months later for bone marrow tests. I went to see Anthony, but he wasnt there. He had passed away.

That happened all the time. My dad would see children running around the ward one day, the next he would see a four-foot body bag in the hall.

Alan was diagnosed with leukaemia after struggling to shake off flu in September 1978 and being sent for blood tests. It was 18 months before he was well enough to return to school.

He was admitted to the hospital in St Albans, where his family then lived and given a lifesaving blood transfusion before being transferred to Westminster.

Doctors feared the worst when chemotherapy and radiation treatment failed.

Alan says: One morning my dad came down and saw I was out of isolation. The doctors said, We dont think he will be here by the end of the week, so we have allowed him out to play with the rest of the children. That evening all my family came, preparing to say goodbye.

However, the doctors decided to give me a second round of treatment, much more aggressive than the first. I was given horrific volumes of chemotherapy to see if my body could take it. We were guinea pigs on that ward, because we had no other hope.

Thankfully it worked, so Alan did not need a transplant. A few months after Alan was diagnosed, his younger sister Angela was born and found to be a match. Had his treatment been unsuccessful she would have been his bone marrow donor.

By the time Alan arrived on the ward, Anthony had been in and out of Westminster Childrens Hospital for six years.

His mum had brought him to England from Australia in the hope of finding a bone marrow donor to cure his otherwise fatal blood disease.

At the time there was no donor register and Britain was in the midst of a recession. NHS cutbacks meant the search soon ground to a halt, leaving Shirley to find funds and volunteers to collect and test samples to see if potential donors were a match.

Shirleys pioneering work, charted in her book A Kiss Through Glass, led to the creation of the first bone marrow donor register in 1974.

Alan says: My dad and Shirley spent a lot of time with each other. Theyd go for a drink occasionally trying to get a bit of normality and hit the refresh button ready to be back next day.

But there were some good times. My dad made pancakes for Shrove Tuesday. Shirley asked if he would make some for Anthony, then the nurses asked him to make some more.

So my dad used the tiny stove in my room to make pancakes for the entire ward, including the nurses.

Comic actor Roy Kinnear, best known for Willy Wonka and the Chocolate Factory and the hit show That Was The Week That Was, regularly visited the ward where his daughter Karina was being treated for cerebral palsy and delighted the children with his jokes.

Forty years later Alan still has his treasured Mr Happy toy which kept him company in his isolation room.

He also has two miracle daughters, Francesca, 20, and Philippa, 17, despite being told the radiation he was blasted with would leave him infertile. Both are ardent Anthony Nolan supporters.

Andy suffers with severe back pain as chemicals injected into his spine caused several vertebrae to crumble. Hes also battled high blood pressure .

Despite this, he hopes to climb to Everest Base Camp in April next year with his brother-in-law and father-in-law and has been training with gruelling treks.

Alan, a manager at Royal Mail, says: Everything we went through has helped so many children. Im lucky to be here and I just want to make the most of my life. That is why I hope to climb Everest to raise money and awareness for Anthony Nolan.

Many know of the charity and its vital work, but dont understand where it came from. They dont remember the little boy who went through so much.

Anthonys life may have been short, but had incredible impact. Thousands have been given a second chance of life. What a legacy.

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Heartbreaking story of leukaemia 'guinea pig' children confined to isolation rooms - Mirror Online

Justin Thomas, Danny Lee tied for 3rd-round lead at CJ Cup – Sports and Weather Right Now

JEJU ISLAND, South Korea Justin Thomas was looking at a three-stroke lead after three rounds at the CJ Cup with one hole to play Saturday, which would have set him up nicely for his second win in three years at South Koreas only PGA Tour event.

But the 18th hole saw a big swing in the scoring at the Nine Bridges course.

South Korean-born New Zealander Danny Lee holed a long eagle putt to finish with a 68. Thomas, who won the inaugural CJ Cup in 2017, bogeyed the 18th for a 70 and he and Lee were tied with a three-round total of 15-under 201 after three rounds.

Australian Cameron Smith was in third place, three strokes behind, after a 68. Jordan Spieth shot 70 and was in a three-way tie for fourth, four behind.

I played well, I just didnt hit a lot of good putts that burned the edges and didnt quite go in, Thomas said. If a couple of those putts fall, I dont make a bad bogey on 18 and the other two bogeys I made, I hit good putts, they just caught the edge and lipped out.

Obviously Dannys playing well, a lot of guys are playing well, so I need to go out and play well tomorrow. I just need to keep doing what Ive done the last couple days and just get a little bit more out of it.

Lee said he was pleased to play well before his family and fans.

Ive never played exceptionally well in Korea, so I also felt I could play better in front of my Korean fans. On top of that my parents and my wife are Korean and my granddad lives here so that would be great. I am glad I had a strong showing this week and hopefully I can say the same tomorrow.

The biggest movers Saturday were last years runner-up Gary Woodland and first-year professional Colin Morikawa of the United States. Their 65s moved them into a tie for seventh place which included Ian Poulter (66) and Graeme McDowell (68).

Defending CJ Cup champion and top-ranked Brooks Koepka withdrew from the tournament before the third round after aggravating a left knee injury a day earlier when he slipped on wet concrete. J.B. Holmes also withdrew after the first nine holes of his third round with an unknown ailment.

Koepka, playing his second event since stem cell treatment on the knee Aug. 25, shot a 3-over 75 on Friday at Nine Bridges after opening with a 69. He was 13 strokes behind Thomas in the limited-field event with no cut.

After consulting with my doctor, I have decided to withdraw from the CJ Cup and head home for further tests, Koepka said in a statement. I appreciate everyones concerns and support. Ill keep you posted as I learn more.

Koepka returned to Florida to meet with his doctors, leaving his status for the HSBC Champions in two weeks in China uncertain. He missed the cut two weeks ago in his season debut at Las Vegas.

The CJ Cup is the first of three PGA Tour events in Asia, continuing next week at the Zozo Championship in Japan which will feature Tiger Woods and ending with the World Golf Championship event in Shanghai.

Clarkston native Joel Dahmen shot a 2-under 70 and entered the final round at 1-under 215.

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Justin Thomas, Danny Lee tied for 3rd-round lead at CJ Cup - Sports and Weather Right Now