(EDITOR’S NOTE: After the main story, we have a side note from someone whose life might be saved by a donor found this way. This isn’t someone Marnie pointed out, but someone who was sharing news about it on Facebook. Please be sure to read past the jump for her story.)
By Keri DeTore
Reporting for West Seattle Blog
As she nears her 25th birthday, Marnie Devlin has been thinking about ways to make a difference. “My friends seem to have these ‘quarter-life’ crises where they wonder about their (life) directions, and I’ve always laughed and thought they were being silly. But now (turning 25) I think maybe I should do something I can point to as an accomplishment.”
Coming from a family of blood donors, and being an EMT, Marnie is well aware of the need for bone marrow donors, and the importance of getting people signed up with the National Marrow Donor Program. She says, “I realized it how easy it is and I thought if my friends knew how easy it is, most of them would sign up. My original idea was to get 25 people signed up for my 25th birthday. I posted my idea on Facebook and Twitter, where the (Puget Sound) Blood Center saw it and wanted to help.”
Thanks to the collaboration with the Puget Sound Blood Center and a number of local businesses, Marnie is hosting a full-on marrow donor registration event this Sunday (April 3rd) at Alki Arts (2820 Alki Avenue SW.) Owner Diane Venti is donating the space and from 2-6 pm, Marnie will be serving champagne and goodies baked by her family while PSBC registers potential marrow donors for the Be The Match program.
Marnie explains that because people think the registration procedure involves something painful and invasive, they won’t do it. Turns out, that’s wrong.
She explains, “It’s just a cheek swab (swabbing the inside of the cheek with a Q-tip) and signing up. There are no needles on the day of registration!”
The Be The Match website explains that while there are currently millions of donors, more are needed, especially from people with diverse ethnic backgrounds and from people of color.
And if you are found to be a match with someone needing marrow? Marnie says, “If you’re called, it’s a one-day outpatient procedure where the marrow is taken from your hip bone. Afterward, you feel like you fell on your butt skateboarding.”
Local businesses have donated items to be raffled on the day of the event. Marnie notes that it costs the Be The Match Foundation approximately $100 per new registration, and money collected from the raffle will go to the Foundation to help offset the cost of registering all the new donors signed up during the event.
Former classmate Joanna Menashe at Menashe & Sons Jewelers in the Junction initiated the idea of the raffle. While Marnie was putting up an event poster in the shop’s window, Joanna offered a freshwater pearl necklace to help raise funds.
Other local businesses including Capers, Feedback Lounge (WSB sponsor) and Seattle Style Salon followed suit and have all donated raffle items. Cactus Restaurant on Alki will be offering a 25% discount to everyone who registers during the event on Sunday, and will even honor the discount during Happy Hour.
Marc Chatalas, owner of Cactus, said, “People like Marnie are what makes West Seattle so unique and such a great community. When (she) asked if we’d like to be involved, we were flattered and eager to help. We’re happy to offer a discount as an incentive and we’ve also been letting our guests know about the bone marrow drive.”
Marnie says the support she’s been getting from friends, family and the community for this event has been “amazing. I’ve lived in West Seattle my whole life and have always loved it, and thought it was a great place. This is a reminder of how great it is.”
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EDITOR’S NOTE: As a testimony to the support this is drawing – someone who doesn’t even know Marnie shared news of the bone-marrow registry drive on Facebook. Her name is Christy Bemis; what she wrote suggested there is more to her story, so we asked if she would share it:
I have a rare blood disorder called PNH, or paroxysmal hemoglobinuria. I’ve been
sick since 1989 when I was 9 years old, I am 32 now. My blood disorder began with Aplastic Anemia causing total bone marrow failure and I relied on daily platelet and weekly red cell transfusions until the AA became PNH. Back then my family did fundraisers to pay to search the numerous registries all over the world for a bone marrow match. At that time each registry cost from $500 to $10,000 just for the preliminary search. None of it was covered by insurance and I was given 3-6 months to live.My current medical status is still grim; on average PNH patients live 10 years. I was diagnosed with PNH in 1991 and no treatment existed except a transplant. We did everything possible to raise awareness and get people to join the registry. My face was on billboards in Seattle, my Mother and I were on the news and in the papers, we even convinced Pete Nordstrom to pay for all Nordstrom employees to join the registry covering the registration fees many can not offord. But we never found a match.
In March of 2007, a treatment was finally FDA-approved for PNH. I wouldn’t have made it even one more month without this medication. Unfortunately, the medication I cannot live without, Soliris from Alexion Pharmaceuticals, is the most expensive medication in the world, retailing at $700,000 a year raking in an amazing $234 million from the 8,000 patients on this medication. The only cure for my disease, and so many other diseases, is a bone-marrow transplant.
When we last looked in the registry for a match for me, they told me my genetic numbers are rare and I have a one in a million chance someone will match me. The way they put these things always makes me feel like finding a bone-marrow match is like playing a lottery, a lottery where I hold 20 million tickets and still lose. But every person that joins the bone-marrow registry is one more chance at life for me and so many others. Even if in joining the registry you don’t match me, you will give me hope, and that is something everyone waiting for a transplant of any kind needs just as much.
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