We are so thrilled to announce the Potter family, founders of Marshall’s Miles, and the Reilly family, who organize Connor’s Fun Run, have raised $10,000 for Dr. Keirstead’s research. The Potter and the Reilly families teamed up to support Unite For The Cure and this is what Laurie Potter had to say about their efforts:
When we signed on to be part of this project, we were unsure of how much money we were able to raise. Since we run our own non-profit organization, typically we hold a motorcycle ride once per year and we accept other donations throughout the year from generous supporters. In past years, the Reilly family has put on Connor’s Fun Run and graciously donated their earned funds to our organization in support of other SMA families. In recent years, unforseen family circumstances, the economy, and other obstacles have prevented them from hosting this event. Knowing how generous and completely supportive their community has always been, Karen and Bill decided to do a letter writing campaign for their “Unite” project and send it to all supporters (both past and present) of Connor’s Fun Run. There are currently 506 names in the database and each person received a copy of this letter:
Greetings Connor’s Fun Run Supporters!It’s hard to believe that two years have passed since hosting Connor’s Annual Fun Run. In the past, this event has always given us the opportunity to meet, in person, so many of the generous contributors in helping our fight against Spinal Muscular Atrophy. We certainly hope everyone has been well! We are proud to report that Connor has been very healthy and happy. Connor continues to attend school where he sees and interacts with classmates through an online conference connection. Each morning Connor looks over towards his laptop and blinks his eyes asking for it to be turned on. We know that he loves the social interaction that most healthy kids are able to experience physically when they attend school in person. We are very blessed that these computer systems exist today!
Many of you may know from our past letters that years ago we united with another very special SMA family, Mark and Laurie Potter of Douglas, MA. Their son, Marshall, was born a few months after Connor in 2002 and was also diagnosed with SMA. Marshall lost his battle with this disease just four months later. They started a foundation in Marshall’s memory called Marshall’s Miles. Their mission, like ours, continues to be to raise funds towards a cure for SMA as well as to support families struggling with this disease.
Together with the Potter family, we are writing to you today to announce some very exciting SMA news. There is an SMA research effort that is supported by Families of SMA (www.fsma.org) that is less than 6 months away from some very promising trials. Over the last 5 years, this trial has completed all the necessary FDA animal testing which opens the door to the start of the next phase–human clinical testing on SMA patients. Just last month, we learned, the research is currently lacking the necessary $500,000 to get that phase underway. This specific trial is headed by Dr. Hans Keirstead, who has perfected a process that replaces lost motor neurons. This therapy has the potential to not only cure Spinal Muscular Atrophy, but also ALS (Lou Gehrig’s Disease). The specifics on this trial can be found at the following website: http://uniteforthecure.com/sma-stem-cell-program/..In the last 7 years, the cure for SMA has never felt so close. Over the last several weeks, we’ve been pleasantly surprised to learn that so many families are joining forces in support of Dr. Keirstead’s efforts. One of the most difficult things to cope with when having a child diagnosed with SMA, is hearing the words: “there is nothing you can do, there are no drug therapies to try to cure your child…your child’s body will stop functioning over the next few months with loss of movement, the loss of swallow, the inability to take a simple breath…there is no cure!” The families joining this effort are as determined as we are, to wipe out SMA.
Over the next few weeks our very specific mission is to help raise $5,000 toward this effort. We invite you to read more about this cause and read where families have joined forces at www.uniteforthecure.com. We know this is a very difficult time for many struggling with the economic challenges that face us all. We wouldn’t ask for your participation if it wasn’t such a critical time for those of us that have waged this war on SMA. Any contribution gets us closer to our goal and is greatly appreciated. We know with your support we can reach our goal of $5,000 quickly. We know in the medical research world, cures for many disease can and have be found. With proper funding of promising research we have hope that day will soon come for SMA!.We guarantee that 100% of these proceeds are tax deductible and are going directly toward the cure. We look forward to seeing you at the return of the annual fun run in May 2010~Gratefully,The Reilly & Potter Families
Almost immediately, the checks started coming in. From the beginning, we knew that Marshall’s Miles would send in the $5,000 that we committed to. We figured that anything else that came in from the letter campaign would be just an added bonus; yet we were confident that the supporters of the mighty Reillys would not let us down. And they did not! The letter writing campaign raised an astonishing $5,035! We are more than pleased that we raised $10,000 toward Dr. Keirstead’s efforts. As we soon learned, it really is for the greater benefit of all, when we all work together. We are honored that we were given the chance to unite for the cure! It can’t come soon enough!
Thank you so much Potter and Reilly families and congratulations!!! And we couldn’t agree with you more — amazing things happen when we collectively work together! The Potter and Reilly contributions now bring the total Unite money earned for Dr. Keirstead to over $88,000! Amazing!
