The Gooden Family: Euchre Tournament Raises $700

Baby Nora Gooden’s Aunt Tiffany shows determination goes a long way! Her euchre tournament raised over $700 for Unite For The Cure. Way to go Aunt Tiffany!!!

Hi!  I’m Aunt Tiffany, proud aunt of Nora Gooden, and I organized an euchre tournament to benefit her and Unite for the Cure for this past Sunday.  Since I used to work at the local animal shelter, they were kind enough to let me use their community room in exchange for donations off their wishlist.

I had invited over 100 people, and I wish I could tell you that dozens came out.  But, I can’t.  I was heartbroken as more and more ‘maybes’ and even ‘yes’ RSVPs changed to ‘no’ in the week before the event.  I nearly canceled the event, and I felt that I’d failed my dear niece.  But, I decided to make the best of it, and try to enjoy the company of the four (four!) people that RSVP’d with a yes.

In the week prior to the event, several friends that couldn’t attend surprised me with donations, and one couple that attended the event made a huge $500 donation!  Their son was born at just about the same time that Nora was diagnosed with SMA, and I think this affected them a great deal.  The generosity of everyone blew me away and touched me greatly, and I’m pleased to say that the event raised $700.

So, for those of you out there that are working on planning events and worried about a lackluster response, I’m here to tell you not to lose hope.  Every little bit helps, every bit of education matters, and the generosity of friends and strangers may just surprise you.

Stem Cell Based Treatment For SMA Receives FDA Orphan Drug Designation

Another important milestone was achieved by the promising Spinal Muscular Atrophy (SMA) stem cell program today: California Stem Cell (CSC) received orphan drug designation from the FDA to its stem cell-derived motor neuron product aimed at treating SMA. This provides several incentives to companies in the private sector, such as CSC, developing novel drugs or biologics to treat diseases with relatively small market potential. This is also extremely important as reaching this milestone is a positive step forward for the SMA community and shows significant progress being made to develop an effective treatment for our children.

Click here or on the image below to read the full press release…

Coleman Family Reaches $5,000 Goal

The Coleman family of Utah, whose darling two-year-old son, Jonas, has SMA Type 1, have reached their personal goal of raising $5,000 for Unite For The Cure! Their hard work has helped accelerate Dr. Keirstead’s SMA stem cell program at UC Irvine. Congratulations to the Colemans on raising $5,168 in just two months and way to go!!!

Butler and Trakas Families Surpass $5,000 Personal Goal

The Butler and Trakas families teamed up to raise $5,000 for Unite For The Cure and they have zoomed passed their personal goal, raising over $6,300 for Dr. Keirstead’s promising research! The Butlers and the Trakas families worked diligently and creatively, organizing multiple events, including a bake sale, a Mary Kay fundraiser, a weight loss challenge and even a drink-a-thon. Both the Butlers and Trakas families live in Florida and both have lost beautiful babies to SMA Type 1. We are so proud of you and we know your angels, Andy and Andrea, are, too!

The Butler Family

The Trakas Family

Vote for GSF to Help Fund Dr. Keirstead’s Research

Here’s a simple, FREE way to help fund Dr. Keirstead’s promising SMA stem cell program. Chase Community Giving is a grassroots program run by Chase that will allow Facebook users to vote for eligible local charities and nonprofits for a chance to win a portion of the $5,000,000 Chase will be giving away. The Gwendolyn Strong Foundation, a 501(c)(3) nonprofit organization focused on raising awareness of SMA and funding to accelerate a cure, is eligible for this campaign and we have agreed to donate 100% of anything that we receive through the Chase Community Giving campaign to Dr. Keirstead’s promising SMA stem cell program. The first round of voting ends Friday, December 11, 2009 and the top 100 (TOP 100!!!) charities and nonprofits will receive $25,000 from Chase. So, help us out and use one of your free votes to vote for the Gwendolyn Strong Foundation to help fund Dr. Keirstead’s research.

How can you vote? Simple.

Click HERE (http://apps.facebook.com/chasecommunitygiving/charities/710566) to go to the Facebook Chase Community Giving page to vote for the Gwendolyn Strong Foundation.

Please vote, post the link on your Facebook page, Twitter about it, blog about it, and email your friends and family to vote as well.

Unite For The Cure Rolls Past $95,000 Raised to Date

The 24 Uniters have officially kicked it into high gear these past few weeks. Over the weekend, the Unite For The Cure campaign rolled past the $95,000 milestone! And there’s nothing stopping these inspiring families from achieving their goal of raising $100,000 for Dr. Keirstead’s promising SMA research. Keep up the amazing work Uniters!

Click here to check out the Unite For The Cure reporting system to see how all of the Uniters are doing…

The McClay Family: Spaghetti Feed Huge Success, Raises Over $16,600,

The McClay family of Washington set an ambitious personal goal to raise $10,000 for Dr. Keirstead’s research through the Unite For The Cure campaign. Not only did they reach this formidable goal, they surpassed it — with one event!!! Here is what Rozie McClay, mom to darling Kiley, SMA Type II, had to say about their fun and successful fundraiser:

The Unite for the Cure Spaghetti Feed was an amazing event.  Our family and friends went above and far beyond the call of duty.  The community support we received warmed our hearts.  We had auction items and raffle items including Cabela’s camping gear, spa baskets and mixing bowls with all the goodies to make cookies!  We had table service with a smile, delivering delicious plates of spaghetti, garlic bread and salad.  A side table overflowed with homemade cookies, brownies, and cheesecake. The kids enjoyed a craft table where they were able to make turkeys and color Christmas ornaments.  We had wine tasting of our very own Unite for the Cure Pomegranate Zinfandel featuring Kiley’s picture on the label.  At the end of the day, we were able to send in more than $11,000.00 to add the incredible efforts of everyone involved with Unite for the Cure. Bring on those human clinical trials!

We know this event did not happen without a lot of hard work and we are so glad it was such a fun and positive experience. Way to go McClay family and congratulations!!!

In addition to the funds raised during the spaghetti event, Shelley and Marshall Eisenberg, aunt and uncle to Kiley McClay, have personally donated $5,000 to the Unite For The Cure campaign for Dr. Keirstead’s SMA research. And this is why:
When my brother and sister-in-law, Steve and Rozie McClay, told us their beautiful daughter Kiley had a disease called Spinal Muscual Atrophy we were devastated.  It seemed unreal.  Like any large family, ours had it’s share of ups and downs, but mostly ups.  This was different.  We were unsure how we could console Steve and Rozie.  We knew their pain and sorrow would need time and space and we felt helpless. They had just closed on a new house that needed some work. We got busy.  Along with some of their friends, our family helped paint the inside of their new home so they could move in.  It felt good to know that we were involved in something that could really help.  When we found out about Unite For The Cure and how Dr. Keirstead needed gap funding for his research we knew we needed to get busy again.  We knew we needed to be part of raising money for this. We knew in our bones that Dr. Keirstead’s motor neuron replacement trials were the best hope for a cure and we knew the time was now.

With only a little over a month to plan, we raised $11,691.00 (with more on the way) by hosting a spaghetti feed/raffle/auction fund raiser, from donations from friends, family and caring strangers and from donations from a host of amazing retail establishments.  My husband Marshall and I donated an extra $5,000.00 in addtion to the fund raising monies for a total of $16,691.00!  We had been waiting for the right time to donate to an SMA cause on behalf of a very generous individual, Artemis Joukowski, and on behalf of Kiley McClay. Without question, Unite For The Cure was the venue we had been waiting for!
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This whole experience has been so uplifitng to our family and friends. Thank you Strong family, Families of SMA and everyone who helped us reach above and beyond our goal, giving us such hope for a cure.  You mean the world to us. And last, but not least, thank you to Dr. Keirstead, without who’s intelligence, caring, and dedication, none of this would be possible. 
Warmest Wishes,
Shelley and Marshall Eisenberg
$16,691 to accelerate Dr. Keirstead’s research — amazing!!! Enormous congratulations to the entire McClay team!!! And thank you!!!

The Potter & Reilly Families Raise $10,000 For Unite For The Cure

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/.
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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
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!

The Wright-Beasley Family: Waffle House Event Raises $1,200

Friends of Rita Wright and Jason Beasley were inspired to help raise awareness of SMA and funds for Dr. Keirstead’s groundbreaking program in honor of beautiful angel baby Eli. Eli lost his fight with SMA on January 14, 2009, but his bright smile will forever impact many. Brandi Dorsey just knew she had to do something to help. She approached the Waffle House in Riverside, Maryland to hold a benefit, which raised over $800 and employees and diners gladly donated even more to bring the event total to more than $1,200!!! Thank you so much Brandi for organizing this and thank you to the wonderful Waffle House employees for making it such a success. The help of friends makes a huge difference!

Uniters Keep Inspiring, Pass $80,000 Milestone!

This week the Uniters have passed another very impressive milestone — these 24 inspiring families have collectively raised over $80,000 of their $100,000 goal for Dr. Hans Keirstead’s promising SMA stem cell program at UC Irvine. And get this…they’ve done it in just a tad over 3 months. Truly an unbelievable achievement!

You guys are all amazing. Keep up the great work!

Click here to take a look at the Unite For The Cure reporting system to see how all of the Uniters are doing…