The journey toward a cure or treatment is made by the help of many - here is a note from one of the researchers funded by the Friends of FSH Research.
The work my research team does is guided by a desire to accomplish a difficult task put before us; that is, to find a way to relieve the suffering and loss of muscle function caused by FSH dystrophy.
Contributors to Friends of FSH Research are not only helping us to understand the disease, but are also contributing to early efforts to find a treatment. Our excitement about the research is enhanced when we are reminded each year at this event of the need for our efforts and the wonderful support we have from the local community. We appreciate your contributions that make our work possible.
No treatments or therapies are available for those with FSH Muscular Dystrophy. To learn your child has a progressive degenerative condition, and have nothing to offer which may alter that course is heartbreaking, you feel powerless.
So the next question was "How close are we to developing a treatment?" "What are researchers doing for those with FSHD?" The answers to those questions were "not close" and "not much."
It was only in 2004 that a bill was passed mandating the funding of Muscular Dystrophy research by the National Institute of Health (NIH). Up until that time there was no Muscular Dystrophy research being supported by the NIH. The National Institute of Health provides research grants to scientists for all types of research. There are grants to study conditions such as aging, asthma, AIDS, acne, Chronic Fatigue Syndrome, Depression, Infertility, Mental Health, Obesity, Psoriasis, Smoking, etc. But prior to the legislation passed in 2004 there were no grants to study the life altering, dream ending disability collectively known as Muscular Dystrophy.
Muscular Dystrophy was a condition I had learned about in Nursing school. I never knew much about it as I focused on maternity nursing, childbirth and a variety of perinatal issues. In fact, I always got Muscular Dystrophy confused with Multiple Sclerosis. I don't know why I confused the two conditions other than they both start with the letter "M." It was not until my son was diagnosed with Facioscapulohumeral Muscular Dystrophy that I learned what Muscular Dystrophy was and what it would mean for his life.
In 2003 when Brian was diagnosed with FSH Muscular Dystrophy we felt lost. Children's Hospital in Seattle, although compassionate and supportive, had little experience with FSHD since it is most often diagnosed in the late teens or as a young adult.
We were told to come back in a year to "see how he was doing." To see what? To watch the progression of his muscle loss? Were they planning to just study his muscles & record his physical decline?
We began searching for information on the internet - seeking resources, answers, options, treatments, support. From 2003 to 2004 I think our family just survived and tried to live as if nothing had changed. Brian stopped rowing on the local crew team and spent more time in his room playing games & listening to music on the internet. It was his junior year in high school and he had to face a diagnosis of a progressive condition that would impact every aspect of his future. He shared this "secret" with no one.
As a mom, I worried about the needs of the other children in the family. I felt that FSH should not rule our home nor impact their lives. I worried that FSH might cast a shadow over our entire life. We soon realized that we had no other choice.
Those familiar with auctions know that there are a million little details to attend to before the event. Today I had to run a few errands, pull together a few loose ends and mark items off my "to do" list.
It is heart warming, and often surprising, where support & sincere caring comes from.... as I shopped in Office Max for packing supplies I noticed some bubble wrap marked down. I spoke with the store manager and asked if they might be willing to donate some of what they had on sale to our event. He showed interest in FSH & the event we are having & readily offered all he has left to us, as a donation. I now have bubble wrap for this event & next year's too!!
Dropping in our local QFC store later, I spoke with Vic about our event. My hope was to have a $100 QFC/Kroger/Fred Meyer prize for our opening auction game. While we talked he shared with me that a $30-$50 gift certificate would be possible. As he filled out the paperwork & I shopped he took the time to read our newsletter which told about Brian, our family, the research being funded and our charity event. Not only was he moved by the need to fund FSH Muscular Dystrophy research but he cared enough to ask about my son & how he was doing.
Vic, the QFC store manager at Parkplace has a heart of gold - he donated a $100 gift card for our event!!
So many have given so much to make this event possible. What a positive, energizing experience it is to share your story with others and have them respond with such warmth and support.
Following a year of seeking out donations by writing letters, making phone calls, emailing businesses and going door to door to various businesses we have the donations we need for our auction.
The household tasks have taken back seat to the preparations for the auction as evident by the dog hair on the floor, a huge stack of laundry in the hallway and newspapers gone unread, still in their plastic bags. Every year the pattern repeats - our home becomes an office, a storehouse and "auction central." Today there is packaging to finish, labeling each item so there is no mistake about where it goes in the displays and so at the end of the evening the correct bidder goes home with the right item.
Last night was our pre-event volunteer meeting. I am so thankful that people are willing to give of their time to volunteer at our event. An event of this size would be impossible to carry off without the help of many!
Seattle Jazz Musician Michael Brockman and his jazz quartet will perform throughout the silent auction - arrive early so you don't miss out on this great music & a chance to pick up some great items.
Read more about Michael Brockman at michaelbrockman.com An authority on the music of Duke Ellington, Brockman is the lead saxophonist and co-director of the award-winning Seattle Repertory Jazz Orchestra, and has performed with Wynton Marsalis, Clark Terry, Frank Wess, Frank Foster, Jimmy Heath, Quincy Jones, James Moody, Benny Carter, Ernestine Anderson, Arturo Sandoval, Ella Fitzgerald, Jon Hendricks, Joe Williams, and many other luminaries of jazz.
I just got a phone call from the Nintendo Company in Redmond, Washington - they are donating a Wii to this year's "FiSHing for a Cure" auction. Our community of businesses, artists and private individuals has been amazing. Each year as we prepare for this auction, we see a willingness to give that is awe inspiring!!
Learn more about the Wii @http://www.nintendo.com/wii Learn more about the auction http://www.fshfriends.org/auction/auction.htm
“I was diagnosed with FSHD shortly after my 20th birthday. …. I was unable to whistle, drink through a straw and I slept with my eyes partially open….. I have come to realize the devastating affect muscular dystrophy has had on my life.”
Facioscapulohumeral Muscular Dystrophy or FSH affects more than 25,000 individuals in the United States
“To be categorized as disabled is something that has always frightened me not because of the term, but because of the classification it can entail. As if you are a little bit less than what you could be…” “My mother loved horses, but this disease restricted her from doing many of the things she loved, especially as she reached adolescence….”
FSH requires giving up dreams, settling for a path dictated by the disability.
I think because of the nature of this form of muscular dystrophy it doesn't always get the attention it deserves. It's physical and emotional effects rival those of other diseases and dystrophy's, and yet it is not researched as other disorders are.
FSH research lags far behind other similarly life altering conditions.
FSH is “unpredictable in nature; there is nothing you can really do to prevent losses.... the loss you experience is not just in your facio, scapular, and humero areas, it affects the rest of the body as well.”
Friends of FSH Research is dedicated to funding FSH research.
On Saturday February 7th the 5th annual “FiSHing for a Cure” dinner & gala will take place – make your reservations today!Join with us as we impact lives affected by FSH and those diagnosed with FSH tomorrow.
Contact Friends of FSH Research at firstname.lastname@example.org or call 425-827-8954 to learn more about FSH or make a donation. To learn more about the very special gala on February 7th and the many great auction items go to our website, www.fshfriends.org.