It would be understandable if an active, athletic 17-year-old boy
decided to feel a bit sorry for himself after being diagnosed with an
incurable disease. Brian Colella of Kirkland, however, had a different
reaction when he learned last summer, at the age of 16, that he had
facioscapulohumeral muscular dystrophy, or FSHD.
For Brian, a competitive rower with the Sammamish Rowing Association,
the diagnosis -- which came after rounds of visits to doctors to find
the cause of his ongoing shoulder and back stiffness -- ended his
rowing career. But it ignited a fire for another cause: to find a cure
for FSHD, a non-lethal form of muscular dystrophy that affects the
face, scapula and arm muscles, "so it can help other people with worse
cases."
ParentMap first learned about Brian when his mother, Terry Colella,
contacted us about the Pacific Northwest Friends of FSHD Research. She
spearheaded development of the fundraising organization after her son
was diagnosed. (Brian's dad, Rick, is a former Olympic swimmer who won
a bronze medal in 1976.)
The non-profit group has contacted others who have FSHD in hopes of
raising awareness about this little-known disease, which faces big
barriers to fundraising for research and a cure. Since the disease is
non-fatal, only 5 percent of the money raised for muscular dystrophy
research (such as those funds generated through the huge Jerry Lewis
Telethon on Labor Day weekend every year) goes to FSHD research.
Brian, a senior at the International Community School in Kirkland,
decided to take on as his senior project the task of chairing an
auction -- FiSHing for a Cure -- to raise funds and public awareness
for FSHD. The goal: to stimulate more research and in particular, to
understand how FSHD, which causes a progressive weakening and loss of
skeletal muscles, harms the muscle cells so that a cure can be
developed.
Because of his courageous approach to his disease, and his commitment
to helping others, ParentMap recognizes Brian as our Hero for September.
Q. Tell me about the auction. How did you come up with the idea?
A.
I came up with FiSHing for a Cure because I think it is easier for
people to associate a common word with something, in this case fish,
and the acronym FSH, rather than trying to remember facioscapulohumeral
muscular dystrophy. The auction is at the Bellevue Hyatt Regency Hotel
and it will take place on the evening of Jan. 29, 2005. It is our first
auction and we hope to make it an annual fundraiser for our nonprofit
organization. Generously, John Curley from Evening Magazine has offered
his services to emcee and we managed to acquire the auctioneering
services of Keith Robbins, who is a really nice guy and luckily for us
happens to also be a fisherman! We hope that there will be around 400
guests at our auction and our goal is to raise $100,000.
Q. How can people get involved?
A.
Anyone can become involved in our auction just by giving us a call or
by emailing us and saying they want to help. In fact, a rowing coach in
Philadelphia who saw the story on the Internet emailed us the other day
saying he wanted to help, so now he's going to organize a row-a-thon at
Boathouse Row to raise money for the auction.
Q.
It sounds like your family has been very supportive of your efforts. Do
you also have friends and classmates helping with the auction?
A.
I have gone to International Community School, which is a pretty small
school, for six years. We want to start now and get the school
involvement before I graduate so that we can take advantage of the
incredible opportunity we have with the teachers and students and their
families that we know so well.
Q.
I imagine that there are days when you don't feel all that great. What
keeps you going every day? What message would you have for other kids
who face physical challenges because of illness or injury?
A. Teen heads auction aimed at finding disease cure Usually I feel pretty
good and I just enjoy what I have now and what I can do now, and I
don't think about what's going to happen. I don't ever sit around and
wallow in self-pity. I've accepted that I have this disease and no one
can predict what my future will be like, so there's no reason to try.
I'm just working now with this auction to maybe make it so my future is
clear and I can be assured that I will be an able and capable adult.
These are the years of my life when I'm supposed to have fun, so I am. ™
To receive an auction invitation, to donate items or money, or to
volunteer, call 425-827-8954 or 425-283-8782 or email FishAuction@juno.com
