We interrupt our celebrations…

We interrupt our celebrations…

What do a seven-year-old boy in New York, a three-year-old girl in Baltimore, and an eight-year-old boy in Los Angeles have in common? Other than playing games and being with their pets, they are all living on borrowed time. And you may be able to save them.

During Multiracial Heritage Week, we do a lot of celebrating and talk about being multiracial, but we also remind people about becoming bone marrow donors for sick children and adults with blood diseases.

There is a blood cancer diagnosis every four minutes in the United States and every one of us could be the key to saving a life. Anyone between the ages of 18 and 44 can register with Be the Match, to potentially become a donor. Multiracial adults are in high demand.

Approximately 70 percent of patients do not have a fully matched donor in their own family, which leaves them to search the registry. And depending on a patient’s ethnic background, the likelihood varies for finding the perfect match. Most prospective donors are white.

“Caucasians are likely to match 77 percent of the time, African Americans are likely to match 23 percent of the time,” said Amy with Be the Match, operated by the National Marrow Donor Program. “There is no medical reason for that likelihood, it’s just the number of committed donors we have on the registry.” There are no statistics on multiracial patients.

So we interrupt our celebrations to ask you to register with Be the Match and help save lives. Thank you.

You can watch our video “Invisible in Healthcare” here: http://www.projectrace.com/teen-project-race/video/

Project RACE

Project RACE Teens

Project RACE Kids

Project RACE Grandparents

 

 

Photo Credit: ABC News Go.com

Bone Marrow Match Needed

7-year-old SoCal boy with cancer needs mixed-race bone marrow match to save his life

When a cancer patient is trying to find a stem cell donor, ethnicity is one of the determinants in finding that perfect match.

One local child is having a particularly challenging time and needs your help.

Seven-year-old Ryan knows it’s going to be a long while before he sees his cat again. The Redondo Beach boy is at Children’s Hospital Los Angeles preparing for his second battle with acute myeloid leukemia. It’s an aggressive form of leukemia that’s rare in children.

His father, Chris, said Ryan is having a hard time.

“He asks the gut-wrenching question of ‘why me?'” he said, “‘Why does this have to happen to me?'”

When Ryan was first diagnosed in kindergarten, his doctors searched every bone marrow registry for a match.

“Ryan is of mixed-race ethnicity. My wife is Vietnamese,” Chris said.

The search came up empty. Only 4 percent of the registry is mixed race. So his doctors tried a stem cell transplant with Ryan’s brother Matt, who is a half match. It worked for 18 months, so Ryan was thrilled. He went back to school, and his family posted the news on YouTube.

But a few weeks ago, Ryan started getting headaches. Tests revealed that the cancer had returned.

Ryan is back to square one in need of a matching donor. His best chance? Someone who is half Vietnamese and half white.

“We’ve got more donors than ever before, more success in finding donors than ever before, but there are certain subsets that are being left out,” said Dr. David Freyer with the CHLA Children’s Center for Cancer and Blood Diseases.

The recruitment group, A3M is making it easier than ever before to become a donor. All you have to do is get online and register.

“Once you’re done, a swab kit is mailed to you within three to seven days. So you can do it from the comfort of your own home,” said Auimi Nagata, recruitment manager for A3M.

Registrants place the swab back in a vial and ship it for free. If you’re a match, donating can be as simple as the process of giving blood.

“Any donor will be in good hands and you need not worry about the safety of it,” said Freyer.

Ryan needs people to register now.

“To be the one person, I can’t think of very many situations to be truly a hero,” his father said.

News From Be the Match

Generous Marrow Transplant Recipient Provides $50,000 in Matching Funds
Bill, Sandra, Brent
Bill Pomeroy (R), transplant recipient, with his wife and his marrow donor, Brent. Bill’s foundation, The William G. Pomeroy Foundation, is sponsoring a $50,000 match offer to help transplant patients and their families. Give now.

Through our matching gift campaign, you have an opportunity to do so much for patients in need. The William G. Pomeroy Foundation will match the first $50,000 received by July 31, for a total of $100,000. The money will be used to:

bullet  Add new members to the Be The Match Registry®
bullet  Provide financial assistance to transplant patients
bullet  Support life-saving transplant research and education

In 2004 Bill Pomeroy was diagnosed with acute myeloid leukemia, a blood cancer that takes more than 10,400 lives each year. Fortunately, Bill found a matched donor and received a transplant in 2005.

During his cancer journey, Bill learned about the urgent need to increase the ethnic diversity of the Be The Match Registry so more patients could find a match. He established The William G. Pomeroy Foundation to support the work of Be The Match®.

Since 2008, Bill’s foundation has helped register more than 20,000 potential donors, which have already produced 40 marrow matches.

Today, Bill is 11 years post-transplant, serves as a Be The Match board member, and has become good friends with the young man from Texas who donated his marrow to save his life.

To take advantage of this opportunity and help save more lives, click here to give today!

The Matchless Woman

Meet the ‘matchless’ woman on a desperate search for a marrow donor

Until she hit 40, Dr. Tracy Jalbuena was one of the fortunate few who seem to have it all. She had a husband she loved, two healthy children, the perfect job and a house in an idyllic spot in Maine.

“My husband and I used to joke that in a movie, this is the part where the couple discovers they’ve moved into a house built on top of a cemetery and all hell breaks loose,” Jalbuena, now 43, says. “And then it did.”
Tracy Jalbuena, with her mother Kathryn Jalbuena, and dad, Numeriano Jalbuena. Jalbuena’s mother is of German and Irish ancestry and her father is Filipino, which makes it difficult for Tracy to find a bone marrow donor match.

Jalbuena’s charmed life ended with a string of medical misfortunes that would turn her world upside down and spotlight the heart-wrenching challenges of finding a bone marrow match for mixed race patients.

In 2012 Jalbuena started to experience symptoms that at first seemed so minor they were easy to dismiss, even for a doctor like herself. But those subtle signs heralded the beginning of her extremely rare illness, leaving her with an uncertain future and depending on someone, somewhere donating bone marrow that would match her exceedingly rare tissue type.

In early 2012, “I started feeling a little more tired,” Jalbuena remembers. “My joints were stiff. I had night sweats. I started thinking I was getting old.”

But then she noticed bubbles in her urine, a sign that she was spilling protein out of her kidneys, and her body started to swell. All those disparate symptoms suddenly crystallized in her mind. She realized something might be terribly wrong.

When test results pointed to a problem with the cells in her bone marrow, Jalbuena understood the diagnosis would be dire.

“I was driving home by myself and I hyperventilated the whole way,” she remembers. “I knew then it was really bad and life changing and I was never going to get back to where [I] was before.”
In March 2012 Jalbuena was diagnosed with primary amyloidosis, a rare condition in which some of the bone marrow cells go haywire and start producing abnormal proteins that can gunk up all the major organs of the body. About 3,000 new cases of AL are diagnosed each year, according to the Amyloidosis Foundation.

In Jalbuena’s case, there was some good news: only her kidneys were involved so far.

“It was a very heavy diagnosis,” she says. “It’s very scary when you’re 40 and you have two little kids at home.”

The best treatment for the disease involves killing off the patient’s bone marrow through chemotherapy and sometimes radiation and then transplanting some of her own stem cells that had been harvested and frozen earlier. Those cells migrate to the bones and create new, hopefully healthy, marrow. It’s not a cure, but it can be a very long-lasting treatment when it works.

The process was tough. “I came home in mid-July, tired, depressed and bald,” Jalbuena says.

Within months, it was clear the therapy was helping. By February, life was starting to come back to normal. Jalbuena was back at work part-time, exercising and traveling with her family.

But then in May 2014 she started to experience intense pain in her spine. She immediately went to her doctors.

Scans showed that the pain in her back was caused by a tumor in the bone. Worse, there were other tumors in bones all over her body. Though she had battled back the amyloidosis, Jalbuena now had developed another type of bone marrow disease, multiple myeloma, a cancer of the very same plasma cells that are involved in amyloidosis.

After hearing the diagnosis Jalbuena and her husband, James, got in the car and drove to a spot where they could look out at the ocean.

“I remember collapsing into his lap and sobbing and saying I can’t do this again,” she remembers, her voice cracking. “I felt like I had just reclaimed my life and things were going well again. It was really hard.”

While it’s not unheard of for a patient to have both amyloidosis and multiple myeloma, it’s extremely rare, says Dr. Jacob Laubach, one of Jalbuena’s current doctors and a professor of medicine at the Harvard Medical School and the clinical director of the Jerome Lipper Multiple Myeloma Center at the Dana Farber Cancer Institute.

Tom Brokaw: Cancer has ‘deepened my awe of my wife’

The really bad news was that the best therapy for multiple myeloma wasn’t an option for Jalbuena. That’s because it is the same therapy she’d been given for amyloidosis and, clearly, it hadn’t prevented her from developing multiple myeloma.

The only other option would be getting a bone marrow transplant from someone whose tissues matched Jalbuena’s. And that’s where things got really tricky.

None of her siblings turned out to be a match. And her particular genetic combination turned out to be exceedingly rare. Jalbuena’s mom is of German and Irish ancestry, while her dad is Filipino.

If she’d been Caucasian there would be a 97 percent chance of finding a match among the people who are in the bone marrow registry.

“For Filipinos it’s a lot lower, probably closer to 83 percent,” says Tonya Davis, community engagement representative for the Be the Match Registry. “And then because Tracy is of mixed race, that poses an extra challenge. Those patients have more varied tissue types.”

As of yet, a perfect match hasn’t been found among the 11 million Americans who have volunteered to be marrow donors, says her mother, Kathryn Jalbuena.

For more about Tracy Jalbuena visit her page on Be the Match here

Sometimes it seemed to Jalbuena that her daughter’s unique qualities were working against her.

“My husband and I have always known that our first born was a one-of-a-kind, with a personality that stands out and shines brightly,” says Kathryn Jalbuena. “But when it comes to this misfortune it means no match.”

Chemotherapy has bought Tracy Jalbuena some time while her family mounts a campaign to try to get more people of mixed Filipino and European ancestry to volunteer to become donors.

A study published earlier this year in the New England Journal of Medicine found the chemotherapy regime Jalbuena is now taking could keep the disease at bay for more than two years.

If a perfect match is found, Jalbuena has a 30 percent chance of being completely cured, Laubach says.

But, he adds, “the relapse rate at three years is at least 50 percent, if not higher, and there’s a high rate of transplant-related mortality — estimated at 15 percent — in contrast to the auto transplant where patients receive their own cells as Tracy did in the past where the mortality rate is less than 1 percent. The [donor]transplant is being considered in her case because the disease has become somewhat aggressive and because she is quite young to have been diagnosed with myeloma.”

Ultimately, for Jalbuena, the most important thing is to have as much time with her kids as possible.

“People tell me I am very brave,” she says. “But it doesn’t feel like that. It’s sort of like I just keep waking up every day and doing the things I need to do. ”

Source: Today

TOP TEN

The Top Ten Reasons why you should donate to the movie My Last Christmas

10.  You are multiracial and one day you may have cancer and need a bone marrow

       donor.

 

  1.   You are interracially married and understand that multiracial people have a much

       more difficult time finding a bone marrow donor than people of only one race and

       you just don’t like those odds.

 

  1.  You have multiracial children who could one day need a bone marrow donor. Their

       children will face the same problem.

 

  1. You are not multiracial, but understand that other people have health issues that

       you may never have to worry about. That makes you very lucky and you can’t turn

       your back on those people who are not as lucky.

 

  1. You’ve learned that every 4 minutes, someone is the US is diagnosed with a

          form of blood cancer such as MDS (Myelodysplastic Syndrome).

 

  1. You find out that more often than not, a bone marrow transplant is the key to

          survival for someone with blood cancer and this movie could raise awareness.

 

  1. You read that fewer than 3% of donors self-identify as multiracial, mixed-race,

          biracial, are of more than one race, or whatever term we or the government label. 

           Increasing the number of donors is vital.

 

  1. You learn that the chances of a multiracial patient finding a match is often as low as

           one in four.

 

  1. You, your relatives, family, or friends are dying because there is a lack of bone

          marrow donors, and particularly multiracial ones.

 

And the number one reason why you should donate to the movie MY LAST CHRISTMAS…It’s the right thing to do.

 

DONATE TODAY. GO TO https://www.indiegogo.com/projects/my-last-christmas-the-movie

 

Finding a Bone Marrow Match

Great Scot Awards 2013: Cancer surgeon picks up the top honour after campaign to find a bone

marrow match for leukaemia stricken daughter

Ayesha with her dad
Ayesha with her dad

INSPIRATIONAL cancer surgeon Nadeem Siddiqui was last night hailed our Great Scot 2013 for launching a life-saving campaign after his nine-year-old daughter was diagnosed with leukaemia.

The remarkable dad began a search for a bone marrow match for little Ayesha and, in the process, raised more than £180,000 for the Anthony Nolan cancer charity and added 500 more people to the donor register.

The Glasgow Royal Infirmary consultant was given a standing ovation at our 23rd annual awards ceremony honouring Scotland’s unsung heroes.

He told how his family take comfort from the fact that the ongoing search for Ayesha is also helping others.

Nadeem’s unwavering determination to encourage more people to put their name on the register while caring for his daughter makes him a true Great Scot.

 

 

Nadeem never gives up fighting to find a donor
Nadeem never gives up fighting to find a donor

 

He said: “We’re ever hopeful we will find the right match for Ayesha but we take solace from the fact we’re also potentially helping other people with a similar predicament to ours.”

Nadeem was honoured at the ceremony hosted by BBC Scotland anchorwoman and Sunday Mail columnist Jackie Bird and top comedian Kevin Bridges. Along with partners Lidl, we saluted the ordinary Scots doing extraordinary things as well as stars from sport, entertainment, charity and business.

But the night belonged to Nadeem, whose fight to save his daughter and help others was described as “truly inspirational” by our judges, led by former First Minister Lord McConnell.

For a doctor used to being able to help other cancer patients, finding out his own child was very ill was heartbreakingly cruel.

He said: “I had to take off my medical hat and put on my daddy hat. There was my daughter looking at me saying, ‘Ach, dad, you’re a cancer specialist, you’ll sort this out. And I was thinking, ‘This is a complete disaster’.

“That was the most difficult aspect in the last 30 months, trying to be a dad and not a cancer
specialist. Having to flit from one to the other because I give a lot of treatment at home and I watch her carefully and try my best to keep her out of hospital. But at the same time, I try to keep her spirits up, try to encourage her to do all the things normal children would do. That’s where the dad comes in.”

Ayesha’s diagnosis of a rare form of acute lymphoblastic leukaemia more than two years ago meant she began immediate treatment.

She has had months of intensive chemotherapy but her best hope remains a bone marrow transplant.

The search for a donor is even more difficult because Ayesha needs someone of mixed race, which is harder to match than for a patient of a north European background.

Nadeem launched a campaign encouraging everyone to sign up and gathered support from the Anthony Nolan charity.

He said: “Many of my patients now know about Ayesha’s appeal and they’ve been fantastic in wanting to help – not just fundraising but advertising the need to get people from ethnic minorities and mixed race backgrounds to join
the register. Friends, colleagues and patients, I can’t thank them all enough.”

Nadeem was our overall Great Scot and one of four Unsung Heroes chosen from a shortlist of
10 finalists. Sunday Mail executive editor Jim Wilson said: “We can’t remember a more inspiring set of finalists. Every one of them is a great Scot and it was a privilege to share their evening.”

More than 500 guests joined in saluting our heroes last night including famous faces from sport and showbiz. Scotland boss Gordon Strachan, TV Dragon Duncan Bannatyne and stars of X Factor, River City and Waterloo Road were all at Glasgow’s Thistle Hotel to honour our amazing finalists.

Funnyman Kevin Bridges had the audience in stitches while singer Jahmene Douglas got a huge ovation after a great performance.

The winner of the Sunday Mail Community Champion – voted for by thousands of Lidl customers – was 91-year-old Harry Nunn, Scotland’s oldest volunteer, who spends three days a weeks helping children and adults with learning difficulties at The Brae Riding for the Disabled in Dundee.

Ross Millar, managing director of Lidl Scotland, said: “All the finalists have gone above and beyond and are Scotland’s real unsung heroes. The most humbling part is they do not ask for any recognition or reward. We’re proud to be part of the Awards”

Medical Monday

Biracial toddler in need of bone marrow donor

PASADENA, Calif. (KABC) — If you have cancer and need a bone marrow transplant, finding a life-saving match can be like finding a needle in a haystack. But for one little girl, the search is even more challenging. But doctors believe you can help.

Right from birth, 21-month-old Sofia Flores knew how to shine.

“She came out with her hand up to her head…ready for the world, eyes open,” said her mom, Erica Westfall.

Westfall says Sofia hit her developmental milestones early. But she was always getting sick.

In July, a urinary tract infection prompted her parents to bring Sofia to the emergency room. There, they got surprising news.

“It was just devastating,” said Westfall.

First, doctors diagnosed her with a rare form of leukemia that only affects one percent of children.

“There were days where she was getting chemotherapy for 10 hours,” said Westfall.

Then her leukemia progressed to acute myeloid leukemia.

“Most patients in her position do not survive without a bone marrow transplant,” said transplant specialist Dr. Jerry Cheng with Kaiser Permanente Los Angeles.

Cheng says no one in Sofia’s family is a match. Her dad is Mexican and her mom is white. International registries turned up nothing.

“We try not to think about it, honestly. Day to day, we don’t really think about the odds and the numbers and percents because that makes us cry,” said Westfall.

In addition to Sofia being biracial, her dad is from Puebla, a state in Mexico. Doctors say that makes finding a match more complicated.

“The ability to find a good match, it follows along your heritage and your ethnic roots. But with the amount of diversity, especially in a great city like L.A., we do get surprises once in a while,” said Cheng.

Related Content

link: National Marrow Donor Drive locations
More: Healthy Living home page

Sofia’s parents are working with marrow matching organization A3M to organize drives. The hope is to find matches, not just for Sofia, but for many patients like her. Registering requires a saliva sample. If you match, the process is similar to donating blood. It’s a small sacrifice that can save a life.

A3M is organizing a marrow drive at Villa Parke Community Center in Pasadena on Saturday from 12 p.m. to 6 p.m.

A Real Hero

Shot Putter Donates Bone Marrow, ending his Career

by /University Chronicle
A shot putter from the University of New Hampshire, in Durham is being declared a hero, except not for his shot putting.
The shot putter, Cameron Lyle trained more than eight years to try to compete in the American East championships taking place next month.
However, the UHN senior who is 21, will hang up his cleats and retire from the sport in order to give someone he does not even know the possibility of living.
Lyle’s journey started two years ago when he was just a sophomore at UHN. He and his track and field teammates were given mouth swabs to join the Bone Marrow Registry, which is nationwide.
Lyle said he had forgotten all about getting his mouth swabbed until a few months ago. At that time, officials from the registry called Lyle to say he was a 100% match for someone who has six months or less to live.
The odds someone will be a perfect match for bone marrow are extraordinarily unlikely. Lyle said doctors told him the odds were about one out of five million. If it does not include family members, it drops to just one out of about four million.
On Wednesday, Lyle started his procedure at a hospital in Massachusetts. The only thing he knows about the recipient is that he is male, 28 years of age and suffers from an acute leukemia. Lyle hopes his bone marrow transplant gives the man a second chance in life.