Ever since she can remember, Ellie Ungar’s uncle has had a hard time walking. As she’s grown up, she has watched him slowly decline throughout the years. Now he is in a wheelchair and also has little range of motion in his arms.
He was born with a form of muscular dystrophy called facioscapulohumeral muscular dystrophy or more commonly known as FSH or FSHMD.
FSH is the most common form of muscular dystrophy and primarily affects the muscles in the face, shoulders, chest and back. Ungar has been volunteering at a Kirkland FSH organization called Friends of FSH Research for the past three years but is now using her experience to go towards her school project.
She, Tiffany Lo and two other students are juniors at Interlake High School. As a requirement, every student must complete the Creativity, Action and Service project. The main goal “is to make the student grow through participating in community actions such as the FSHMD auction” Lo said.
The project is also “a really great way to incorporate objectives from my IB program with something that I really care about a lot and hopefully positively impact my family in that way,” Ungar said.
Part of the project’s requirements is that each student must complete 150 hours of work solely dedicated to their project.
Friends of FSH Research founder Terry Collela said she thinks it’s a “great idea” that Ungar is helping her organization for her school project. Collela started this organization after a close family member was diagnosed with the debilitating, underfunded and under-researched disease. The main goal of the organization is to help fund research for the rare form of muscular dystrophy.
The organization’s first auction was in January of 2005 and then Collela put out a call for research projects in the local scientific community.
“Prior to that, there had never been a FSH-focus research project ever conducted in this area,” said Collela. “Since that time, we have developed a group here at University of Washington, Fred Hutch and at Children’s who are focused on FSH. Our group of researchers have made huge steps and furthered the knowledge of FSH. We still don’t have a treatment, but we’re a whole lot closer to knowing where a treatment has to be directed to preserve and protect muscle cells, because of the group here. We’ve made a huge impact, we’ve made over $2 million from our home organization.”
Since 2010, significant strides have been made towards finding a cause for the disease. Collela explains what researchers are looking at that could provide a clue.
At the end of people’s number four chromosome, there’s a hairpin of sorts that turns and some of those turns for people with FSH are missing, said Collela. With that, the section opens up and a protein called Dux 4 forms. When this protein forms at the end of the chromosome, the protein kills muscle cells, she said.
In order to develop a cure for people with FSH, the end of the chromosome needs to be closed off and block the Dux 4 protein from entering.
Unfortunately, Collela said, “It’s not as clear as you think because now you have the same person with FSH, they’ve had this Dux 4 all in their body, why does it only affect some muscles in their body, but not others? So, we’ve got a lead on it and if we could get rid of Dux 4 I think we would have it but we still have a few other little questions. But, at least we’ve identified this one culprit and I think if we cure that culprit that we’ll have the majority of the condition taken care of; but there are a few little quirks that we haven’t quite worked out yet.”
The 10th anniversary auction for Friends of FSH Research will be held on Saturday, Jan. 25, 2014 at the Bellevue Hyatt.
“It’ll be a big celebration of what we’ve accomplished so far and I’ve got a Pinterest of all the things I’ve gotten so far for the auction,” said Collela.
Most of the items that will be featured at this year’s auction are artwork from local artists. The only big thing they have so far are round trip tickets on Alaska Airlines, but the auction can always use more.
Ungar and her team’s main goal for their project is to raise community awareness about FSH and to generate more funds at this year’s auction than ever before.
Beyond their goal for the organization, Ungar hopes “that what we’re doing and the opportunity afforded by this program can really inspire other people to see community service less as a requirement and more as an opportunity. I think it’s really important that you find something that you’re passionate about and that you feel will make an impact in your life and in other people’s lives. The fact that we’re getting school credit for this is nice, but the real payoff is to see your work help people.”
For more information about Friends of FSH Research or to donate, visit http://fshfriends.org.
Kirkland Reporter intern Maddi Miller is a senior at Lake Washington High School.