Thursday, February 26, 2009

The Promise of their Work

Saying "thank you" is quite inadequate to express our appreciation of the many donors that have supported our mission to stimulate new FSH research activity and to provide the funding needed to get new FSH projects started. Because of the generous support of many - you, our donors have made an impact on FSH research.

The impact you, the donor, has made is clearly stated in this excerpt from a letter, dated Feb. 26th, which we received. The complete letter written by Dr. Paul G. Ramsey, the Executive Vice President for Medical Affairs and the Dean of the School of Medicine is available on-line.

"The Pacific Northwest Friends of FSH Research is helping to make UW Medicine a leader in facioscapulohumeral dystrophy research, compelling some of our brightest investigators to work on unraveling the complexities of this disease. We are so grateful for your support of Drs. Stephen Tapscott, Daniel Miller, Stephen Hauschka, Brian Kennedy, and Joel Chamberlain, and for your continuing commitment to raise money for pilot awards. Your efforts are enabling these remarkable researchers to better understand FSHD, and we look to the promise of their work with great hope."

Working with the University of Washington was a natural direction for us to take when we first organized due to its reputation.

"Almost every week, several UW Medicine researchers receive national or international prestigious honors. UW Medicine has five Nobel Prize laureates, 30 members of the National Academy of Sciences, and 33 members of the Institute of Medicine." (UW website)

Learn more about the UW and the research that is being conducted at this great university.

Wednesday, February 25, 2009

Needed: The Guy in the Big White Hat

Living with FSH has many manifestations - some people are able to perform the various activities of daily life without too much inconvenience or discomfort, those are the lucky ones. Although there are some cases of infantile FSH, the majority of those with FSH Muscular Dystrophy experience muscle losses and weakness by the time they are teenagers or in their early 20's, here is one person's story-

When I was a kid I used to watch Gilligan’s Island. I always was impressed with how Gilligan could raise his arms straight up in the air when surrendering to a whole host of people and animals on various episodes. He always seemed to have a special talent. It was only later that I finally determined that what he could do was not at all special, but was in fact a normal trait. But that was not until after, as a teenager, I began to consistently stub my toes while walking, then discovered that suddenly I could no longer walk on one heel, then not on either, as groups of muscles seemed to give up. This made it quite difficult to pursue my favorite pastimes of soccer and cycling, as I eventually could no longer run or even balance on a bicycle. I eventually was informed that I had the genetic markers and clinical symptoms of FSHD, the third most common form of muscular dystrophy. As a cure I was offered a pair of shoes with Velcro straps and springs. It was the late 1980’s, and I felt at the time like I was in the 19th century rather than the 20th. I quickly realized that any disease named based on symptoms rather than causes is a disease that no one has a clue about.

I was fortunate enough to have become enamored with an occupation that provided enough earnings to not only save for my adopted daughters’ education, but also to directly fund researchers working on the mystery behind this disease. It was not much, at least compared to what an organization like the MDA could muster, but the researchers that I corresponded with were very appreciative of the funds. Over times my extended family has spent close to a million dollars directly on research, and brought together what we have found to be the best and brightest to share their insights. They have discovered amazing things, and have continued to get closer to a cause for this very life-altering disease. But we just don’t have the resources. We try to ensure that every penny is spent wisely, but there are not enough pennies.

So we need help. We need the resources of our government, stretched as they are at this time, to help close in on the answer, to find a cause, to play the part of the guy with the big white hat.

Things can continue as they are, slowly making progress as funding permits, allowing good researchers to go elsewhere as they give up on obtaining grants. You can let me, and the many others like me, continue as we are. Tomorrow I will get out of bed, because I am still able to do that, and even brush my teeth and take a shower myself. I can still walk if I am careful, though the kids know better than to ask me to do something quickly. I’ll be making their lunches tomorrow, but I need to get up early, as it takes me awhile to get things done. Any outing now requires my wheelchair, as it would be painfully slow otherwise, and my knees have taken too many falls as it is. There are many diseases which afflict humans, many much more devastating than FSHD. But the prevalence of this disease, and the very good possibility of actually being able to determine a cause, and thus a path to a cure, would seem to make it worthy of consideration in regards to helping fund research. It is a problem that actually has a chance of being solved, rather than being a hole in which to perpetually throw funds.

Tuesday, February 24, 2009

1 Million Dollars for FSH Research

In hopes of gaining public attention for FSH Muscular Dystrophy and our mission to increase funding for FSH research, I wrote the following press release.

Since we don't have a publicity department, or one for marketing, I decided to write something that might appear somewhat official and send it off to various news agencies.
My fingers are always crossed that someone, somewhere, will read about FSH, our organization, the inadequate funding for FSH, etc. and be curious to find out why.  I would love an investigative reporter to one day to wonder why this condition that impacts the lives of so many, receives so little research funding.   Perhaps, if the history of FSH funding was researched, pressure might then be brought upon publicly funded organizations demanding that they distribute research funds equitably.

5th Annual FiSHing for a Cure Auction
One Million Dollars for FSH Muscular Dystrophy Research

Bellevue, Washington (February 7, 2009) – With the support of sponsors and guests, the 5th annual “Fishing for a Cure” auction cleared more than $200,000 and enabled this home based, grass roots organization to claim a million dollars raised for FSH Muscular Dystrophy research.

Pacific Northwest Friends of FSH Research, based in Kirkland, Washington is extremely grateful to their many supporters over the past 5 years who made this million dollar landmark possible. Guests, sponsors, research scientists and individuals affected by Facioscapulohumeral Muscular Dystrophy, or FSH, gathered on February 7th to enjoy this annual gala event at the Bellevue Hyatt where 100% of the funds raised during the event will be used to fund much needed FSH research.

Since the first “FiSHing for a Cure” auction, held in 2005, the Pacific Northwest Friends of FSH Research has awarded 6 research grants and has made an impact upon the FSH research community. Prior to the first grant to Drs Brian Kennedy and Steven Hauschka at the University of Washington in 2005, no FSH research studies had been conducted in Seattle. “Thanks to the extreme generosity of our community, we have been able to attract scientists to the field of FSH research and fund pilot projects which might shed new light upon this disorder,” said the organization’s president and founder, Terry Colella. Today, a collaborative FSH research network has been developed between the scientists in Seattle based at the University of Washington, Fred Hutchinson Research Center and Children’s Hospital and those at the Universities of Rochester, Minnesota and the Netherlands.

Facioscapulohumeral Muscular Dystrophy is a progressive condition for which there is no treatment or cure. It is the second most common form of Muscular Dystrophy in the adult population and the third most common hereditary disease seen in the skeletal muscle. It is estimated that more than 25,000 people in the United States have FSH, although it is genetically caused and thus, seen past down through generations, 25% of all cases are “sporadic” or caused by a random genetic error. FSH is characterized by a progressive muscle weakness and loss of skeletal muscles beginning in the face (facio), upper back (scapulo) & upper arms (humeral) regions, thus the origin of the name.

Pacific Northwest Friends of FSH Research, also known as Friends of FSH Research, was founded by the Colella family in Kirkland, Washington following the FSH diagnosis of their child in 2003. Conducted from their home, Friends of FSH Research has minimized administrative costs thus, increasing the funds available to achieve their mission of stimulating & funding FSH research. Friends of FSH Research is a 501(c) (3) non-profit organization thus, donations may have tax benefits as dictated by the IRS.

For more information on FSH Muscular Dystrophy or the Friends of FSH Research please visit, or contact Terry Colella at 425.827.8954 or

Sunday, February 22, 2009

FshFriends - In front of the Public Eye

Fully realizing that times may be tougher & tougher for charity organizations I am exploring every way possible to keep raising money to support FSH research. As FSH research moves forward, with new findings and possible therapeutic targets it would be a shame to have the work stop due to a lack of funding. Selling on ebay & locally on Craig's list is just another way to keep our organization's name & mission out in front of the public.

As a professional nurse, my marketing skills & business know how is pretty slim - I am always looking for ways to expand our support base to insure we will remain a viable organization. The cost of research is so terribly steep that we will not be able to fund a large research study, but instead our goal has been to provide "start up" funding to get scientists into the field of FSH Muscular Dystrophy research. By funding a pilot project, we hope that with that data the researchers will then be able to compete for larger funding from larger organizations such as the Muscular Dystrophy Association or the National Institute of Health.

In June of 2006 we gave our 2nd research award to Dr Dan Miller & Stephen Tapscott for their project entitled the "Study of FSH MD Related Defects in Human Myogenesis." Based on the data generated from this project, Dr. Dan Miller was able to win a $200,000 FSH grant from the MDA in 2007.

So now, in the post auction period, I will try to figure out other ways to raise money & get additional money for FSH research. So from our "home based" charity I will sell what I can via Ebay & Craig's list - Feel free to check out my listings on ebay!!

Friday, February 20, 2009

Stephen Tapscott - Fred Hutchinson Center Researcher

We were thrilled when Dr. Tapscott became interested in FSHD research - he received our 4th 2-year $100,000 grant in August 2008. The title of his research study is "Identifying and Validataing Therapeutic Targets in Transcripts from the D4Z4 Repeat."

"The research support provided by the Pacific Northwest Friends of FSH has established an FSH research group in Seattle that is gaining international recognition for its contributions to understanding the cause of FSH. This group is focused on identifying how the mutation in the DNA causes muscle damage with the long-term goal of identifying treatments for this disease. Initial support from the Pacific Northwest Friends of FSH was instrumental in establishing this collaborative cohort of scientists and for the initial work by this group."

Stephen Tapscott
Member, Division of Human Biology, Fred Hutchinson Cancer Research Center Professor, Department of Neurology, University of Washington

To learn more about Dr. Tapscott and his research interests please view his bio and laboratory information. (linked here)

Wednesday, February 18, 2009

"the same crooked smile..."

FSHD impacts individuals and subsequent generations. This is a condition that is often misdiagnosed by physicians thus, the numbers of those affected are difficult to determine. Since we established the Friends of FSH Research in 2004,we have received notes from many people that have FSH Muscular Dystrophy, here is one such letter.

"… My father had FSHD. He had 5 children (2 with FSHD). My brother is severely affected since adolescence, never could work, and never married. My sister, has the gene, married and has 4 children. They have not been tested yet. She is less affected, weakness, poor grasp, and tires easily.... my brother showed signs of FSHD at puberty ,although we thought he was lazy, clumsy and slow. He would come in to rest after only mowing 2 rows. He was strangely awkward and spilt things all the time. It wasn’t diagnosed until he was 18 (incidentally) after a slight car accident when they had his foot in a splint for 2 weeks and then ended up with foot drop. The doctors investigated further and found him to have FSHD. We all needed to be tested and learned then that my father and sister also have FSHD. We thought my brother looked just like my father, the same crooked smile, same whistling from the corner of their mouths, same eyes and color blue, and the same way they carried each other. That is our story."

I very much appreciate people writing to us and sharing their experiences, for that helps others to understand what it is like to live with FSH Muscular Dystrophy. FSH is a condition that is poorly understood by those in the medical field and to the majority of the public. Even organizations that focus upon Muscular Dystrophies often dismiss FSH as "benign" or "non-fatal," thus, relegating it to a condition that does not demand immediate attention. But, FSH is not benign, it impacts every aspect of daily living and in its most severe form impacts the lifespan. In the family story shared here, this father died at the age of 39, a very young man.

Tuesday, February 17, 2009

Dr. Kyba - FSH Research at the University of Minnesota

Dr. Kyba received the 6th research grant from the Friends of FSH Research in August 2008. The title of his research proposal was "D4Z4/DUX4 Induced Pathologies in Mice," his is a 2-year grant for a total of $100,000.

Although the number of FSH researchers are low, the expertise and knowledge that these scientists have brought to the field of FSH is great. We are thrilled to have Dr. Kyba join us in our quest for a treatment or cure for FSH Muscular Dystrophy.

Here is Dr. Kyba's statement regarding his work in FSH research:

Our involvement in FSHD research came through an unexpected connection that we discovered between a gene from chromosome 4 associated with FSHD (the DUX4 gene) and muscle stem cells. We have evidence that DUX4 interferes with the function of muscle stem cells, and thus impairs muscle regeneration.

This new hypothesis for FSHD is based on some very exciting genetic and cell biology data that we have generated in the lab.

In this difficult funding environment, it is difficult for an expert in to receive NIH funding to branch out into new research field.

The generous support from the Pacific Northwest Friends of FSH Research has been invaluable in keeping this research alive & advancing this work in our laboratory as we work towards building an NIH-funded research program.

Michael Kyba, PhD

University of Minnesota

As scientists are being forced to leave laboratories, due to the difficulty to find funding for their work, funding from private sources is ever more critical. The future of human health depends upon the work of these experts.

(by clicking Michael Kyba's name you can read more about his laboratory & his work)

Saturday, February 14, 2009

YouTube Presentation

Our FSH Muscular Dystrophy DVD presentation is now available to be viewed on UTube

This presentation was made by Joe Fenstermaker for our 5th annual charity event.

We are very thankful to those that shared their stories in this video. It takes courage to open up one's life to the critical eyes of the world. These individuals give you, the viewer a glimpse into their lives so that you might understand the effects of FSH Muscular Dystrophy upon the activities of daily life.

FSHD ITALIA Onlus - Amici benvenuti

Another advocate for those with FSHD and for FSHD research. In a press release today, a new organization in Rome, Italy has been established which will focus upon FSH - to increase public awareness of this condition and to support FSH research.

Here is a brief introduction from one of their founding members, written Dec. 2008 -

Let me introduce FSHD ITALIA Onlus -- we are Italy's newly born FSHD patients' association. Our headquarters are in Rome with Policlinico Gemelli and the head of our scientific board is Prof. Enzo Ricci, lecturer at Cattolica University, Department of Neuroscience.

The long-established expertise of Prof Enzo Ricci (15 years of genetics and clinical studies specifically on FSHD), the trust of his patients, and last but not least the existence of reserch projects against this pathology, have been the robust grounds for the birth of FSHD ITALIA Onlus.

I wish to give you a preview of our activities by attaching a press release which will be run through the Italian press on Jan 15. As you will read, our objectives are:

  1. Fundraising to fuel research (two key projects are already in place and only need funding in order to accelerate outcome achievement)
  2. Support of people affected by FSHD by providing key info on how to improve quality of life
  3. Create a culture around FSHD by developing awareness with clinicians, physiotherapists, media and private/public organizations.
  4. Interfacing & collaborate with other associations and research centers at global level.

Our logo, the happy flying turtle, has a very strong symbolic meaning as in the face of FSHD we do not want to sit and cry on ourselves but rather we intend to fight this disease armed by a positive and proactive attitude.

We are so pleased to have another organization with a similar focus and goals working to give those living with FSH Muscular Dystrophy new hope!!

Amici benvenuti!! (Welcome Friends)

Friday, February 13, 2009

Post Auction Sale - Dust is Settling

The dust has settled after our 5th auction. After the event we had to return the next day to pack up the items left behind - things that did not sell, the centerpieces, bidder envelopes, the bidding board, posters, and anything else connected to our event. Thankfully a great friend had a truck & trailer so we were able to make one load which carried it all back home.

Always loose ends to tie up after an auction. There are the items that were not taken home by the buyers and gift certificates left behind which need to get to the right places. Mail the certificates that can be mailed and then drive to houses of those and drop off their merchandise. Takes time.

To save money, we imprint the credit cards and then I hand enter each and every one, one card & one sale at a time. Luckily my mom, now 89 years old, has been willing to read them off to me each year which makes it easier. Usually it takes us a couple of days to enter each credit card, but this year we just sat down & focused our energy and completed this job in one day! Although our paperwork promises that we will send out the final bills by the Monday after the event, there is simply no way this is possible. (this promise needs to be modified)
My mom hand addresses each envelope and I wrote a thank you note to each attendee. We firmly believe that a personal communication is very important - their support to our very personal cause is so special & treasured that we want them to know how much we appreciate them. The last of the "thank you" notes were mailed out today! Ahh, relief!

Today I have posted the items available for purchase. Some of these were items not sold at the event, or were missed by the attendees because there were so many other items to look at - 100% of the money from these sales will go right into our FSH research fund. I have posted the web page below - feel free to take a peek & let me know if you wish to put in an offer.

The DVD presentation, which was presented at the event on Saturday night is now available on Utube. I hope people will take a moment to watch this DVD to learn more about FSH Muscular Dystrophy and how it affects human life. The DVD is only 8 minutes, very much worth the time.

Great story from our "post auction" pulling together of loose ends. In brief, I called a guest to ask how they were planning to pay for their $100 donation promised at the auction. First I thanked her for attending, to which she stated she had been unable to attend due to a migrane headache - I asked if her husband had attended. Neither had been able to attend the event. She asked if there was a bill and I told her that someone mistakenly had used her bid card during the live auction. I told her it was not a problem as she had not been there, but she wished to pay the bill none the less!! A person, we did not know who, had mistakenly bid using her number, but her response was she wanted to help and give to FSH research so she paid the bid. Wow! She didn't hesitate, she wished to give!

Tuesday, February 10, 2009

$203,000 for FSH Research - Thank You!!

What an amazing night - such support by everyone that attended the event on Saturday night.

The volunteers worked all morning & into the afternoon to get every item in place & looking perfect for our guests. Our family was able to go home to rest, eat & change our clothes by about 3pm - returning to the hotel by 4:30pm. Pretty exhausted, but definitely ready for the evening - excited by the party atmosphere & air of anticipation.

Guests began arriving by 5pm - as the "early bird" raffle, new this year, helped to inspire people to arrive early in order to be eligible for the drawing. To win the night at the Hyatt & $75 to spend at the Bellevue Collection they had to check in by 6pm. "Early Birds" benefited by being in the raffle, getting champagne, appetizers and getting the first picks off the "Buy It Now Board."

The final silent auction group closed at 7pm and then the live auction show began.
Wow! What a night. Please take a peak at the pictures here on the blog - should give you an idea of the night we had - raising $203,000 for FSH research studies through the generosity of all those that attended the event.

Our heartfelt thanks to every single person that attended our auction, donated their artwork, money, or services and gave of their time & talents to help us fund more FSH research.

Sunday, February 8, 2009

Fishing for a Cure - 5th Auction Preparation

Starting early, since the boxes full of the bid sheets & table tents were taken in an unmarked box, Rick & I had to get to the hotel early. Rick ran off to buy paint for the "one bid board" and I went to the Hyatt to find the box I had forgotten to label. (another note to myself to not do next year)

Diane & Pat were already at the Hyatt precisely marking the places for each silent auction item to sit, but they needed the table tents & bid sheets. Each table tent/sheet needed to be placed for the team of volunteers to be able to locate the places for each item & start unpacking.

With the help of many, many volunteers the rooms were transformed for our event.
Volunteers are the critical part of the process of conducting an auction - need transporters, packers, unpackers, people with an artful eye for details and arrangements, people that notice an item out of place, a team to prepare centerpieces, a team to prepare the "Buy it Now Board" and finally our security volunteers to walk the halls after everyone else has gone home. Each person we could not do without, that is where saying "thank you" is just not enough, for without the volunteer, this auction would not be possible.

Getting ready - Feb 6th

After packing up items, labeling, preparing auction bid packets we are ready to roll.
The transport team arrived promptly Friday to pack up & transport all of our items to the Hyatt...packing, loading, and ready to go to the Hyatt. We luckily had a truck, two vans, two cars and 10 people to get the job done.
At the Hyatt, we had great help loading carts & getting all the items into a storage room.
Now, just need a good night's rest before our big day.

Wednesday, February 4, 2009

Count Down to Auction

Final preparations are underway for our 5th annual auction - big date February 7th!
Tonight I worked on the signage, signs for registration, signs telling when the silent auctions closed,etc. One error we made last year was that we failed to share our mission with our attendees. I'm afraid that some new guests last year left our event unsure of our mission and what condition they had helped by attending.

Tonight I worked on a poster which I hope illustrates the building FSH research collaboration which our donors & supporters have helped to create. With the funds from our first auction in 2005, researchers from the University of Washington were brought into the field of FSH. Since then, additional scientists from the University of Washington, the Fred Hutchinson Research Center and Children's Hospital have come together to study FSH Muscular Dystrophy. In the past 5 years we have seen this group grow & build a collaborative relationship with researchers elsewhere.

With funding so limited, these researchers are maximizing every dollar by sharing ideas, reagents and data. Although we have far to go to develop a treatment, we have reason to be hopeful.

As my poster states, "the dreams of yesterday are the hopes of today and the reality of tomorrow." With research, a reality of a better future for those with FSH is indeed possible.

Sunday, February 1, 2009

Raising Money - Hope for the Future

Brian was diagnosed with FSH in September 2003....after the family crumbled, we decided we would try raising money for FSH research. We found an organization committed to FSH on the east coast that we wished to help so we wrote a letter to every family member, every friend in fact, almost everyone we had an address for we asked to help us. We raised approximately $4000 for that organization. Clearly $4000 would not impact sufficiently the world of FSH research to help change Brian's future. As a family we took a step back, took another look at how we could help Brian, how we could change the future he faced.

I read about someone in the Seattle area that conducted a benefit auction and how she was able to raise an impressive amount of money for a medical condition she faced. I decided that we should try a benefit auction. To do an auction, Brian would have to share his "secret" with his friends and our community. This decision was his alone, I told him that I would explore other fund raising methods if he was uncomfortable going public. After some thought, he decided to help us conduct our first auction as a part of his senior high school project. He made a call to a friend, to tell the first person about this secret he had kept for the past year. After that call and getting support from his friend, he wrote a letter to each family at the school asking for their help.

I talked with the event staff at the Hyatt and signed a contract for our first auction, the date selected was to be January 25, 2005. It was only after I signed the contract that I began asking friends for their help. It was a leap of faith for I believed that others would care about Brian & those with FSH Muscular Dystrophy and want to help. I made calls to my friends, I asked them for their help as I put together a board of directors for this foundling organization. Not one person responded negatively, no one hesitated, each said "yes." With the auction on the horizon, I began negotiating with the east coast organization & the I.R.S. to make sure we had everything in order before the auction. I needed to get our 501 status established in order to give donors the assurance that their donations would be tax deductible.

The east coast organization moved slowly as they tried to figure out how I could raise money for them, to insure things were done correctly. But, the IRS was clear on what they required me to do before raising money; I needed to raise money using my own EIN number. I followed the IRS requirements and lost the cooperation of the eastcoast organization. Now I had to proceed alone and chart a course of our own.

Work began as we mapped out our organization's mission and articles of incorporation. There were samples on the Internet, writings from other non-profits that we used as we built our organization. I copied, changed and incorporated things that we found which worked for us. With the help of the IRS advisers that I spoke with by phone, we satisfied their requirements and obtained our sought after goal, the coveted 501(c)(3) status.

Not only did we need to get donations for an auction & get people to attend our event, we also had to develop a plan for where the event proceeds would go. I met with Dr. Tom Bird at the University of Washington's Medical Center earlier that year in order to learn about FSH Muscular Dystrophy. Dr. Bird was one of the few physicians knowledgeable about this condition in the Seattle area. I called Dr. Bird and asked for his help.

I told Dr. Bird about my fund raising plan, our organization and our January auction for FSH research. I asked Dr. Bird if he would act as the director of our scientific advisory board. He would need to help us obtain research proposals & coordinate the evaluation of the proposals for funding. Additionally, he would be in charge of asking others to serve on this scientific advisory board with him - thankfully, Dr. Bird was willing to take on this task!

By the end of the summer of 2004, the Pacific Northwest Friends of FSH Research was ready to move forward to their first FSH fundraising auction.