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/.

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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!

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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

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!

Why have the Potters and Reillys decided to unite for the cure?

The Potter Family: Our son Marshall was diagnosed with SMA Type I when he was 8 weeks old. Sadly, he passed away at just 4 months & 6 days old. Remembering how difficult it was for us to gain insurance approval for the necessary items he required to stay comfortable, we wanted to do something to help families dealing with the same thing. Within a year after we lost Marshall to SMA, we teamed up with the Reilly family and Connor’s Fun Run and formed a non-profit organization called “Marshall’s Miles” in support of SMA families and research for a cure. We are committed to doing as much as we possibly can so that we may live to see a cure for SMA. While it is too late for our own son, it is not too late for the many children who are still living with SMA, as well as those who will be born with it in the future. We are very excited about the progress that is continually being made for people who have SMA. It is an honor for us to be a part of Unite For The Cure!

The Reilly Family: Bill and Karen Reilly’s third son, Connor was born in 2002. He was diagnosed with SMA Type 1 at 5 weeks of age. Connor is a happy 7 year old who tele-commutes to school via web conference. Connor is dependent on a ventilator to breathe and requires full time care. A number of years ago the Reilly family teamed up with the Potter family in raising funds for the foundation that Mark and Laurie created in memory of their son Marshall. The mission of Marshall’s Miles is to support families that are dealing with SMA as well as raising funds toward the cure. The current mission that Dr. Kierstead and his SMA stem cell program is on, is the first one in 7 years that sounds very promising. Over the next several weeks, we are committed to a letter writing campaign to help support Marshall’s Miles commitment of $5,000 for the Unite For The Cure!

Welcome aboard Potter and Reilly families! We are so happy that you have decided to work together and be part of Unite For The Cure!