The Calafiore family of California, whose gorgeous daughter, Hayden, has SMA Type 1, surpassed their personal goal of raising $5,000 through Unite For The Cure towards our collective goal of raising at least $100,000 for Dr. Hans Keirstead’s promising SMA stem cell program at UC-Irvine.
Way to go Calafiore family!!! Thank you so much for being part of UFTC.
It is with an unbelievably heavy heart that we post this. The Span family of California and their friends held a skydiving fundraiser in November 2009 for Unite For The Cure. The event raised over $10,000 — an unbelievable accomplishment. Two weeks after the fundraiser, on December 12, their precious fighter Zachary was taken much too soon by SMA. Although there is no way for us to begin to understand what the Span family is going through right now, we know enough to know that there is nothing we can say or do to make any of it any better. Regardless, our thoughts and prayers are with Dave and Kellie during this unfathomably difficult time.
Below is an article for Parachutist magazine by Jennifer Domenico about the skydiving fundraiser:
On November 28, 2009, the Perris Valley skydiving community, in association with numerous sponsors from the skydiving industry, united together to raise money to fund a cure for Spinal Muscular Atrophy (SMA). SMA is a terminal motor neuron disease and is currently labeled the number one genetic killer of toddlers worldwide. The fundraising event was coordinated by Dave and Kellie Span, longtime family of Perris Valley Skydiving and Square One Parachute Sales, whose son Zachary was unfortunately diagnosed with this disease in June at two months old. At the time of the fundraiser, Zachary was hospitalized and fighting for his life, up against a disease for which there is currently no cure or treatment.
Through a comprehensive fundraising effort which included a silent auction, Chinese raffle, classic raffle, bake sale, and poker tournament, Perris Valley skydivers, various commercial sponsors and friends of the community raised in excess of $10,000. Mirage Systems donated a new container for the centerpiece raffle which was won by skydiver Shawn Foley. Other primary sponsors included Perris Valley Skydiving, Icarus Canopies, United Parachute Technologies, Square One Parachute Sales, Aerodyne Research, and Perris Fury. Secondary gifts and prizes were donated by Skydive Hawaii, Bonehead Composites, Sky Systems, Bev Suit, Alti-2, Gatorz Sunglasses, and numerous other individuals and businesses whose generosity made this event such a huge success. Thanks to everyone who gathered on that cold, rainy November day in Perris, a significant step was made to give little Zachary and his family hope that there is a fighting chance for other SMA children in generations to come.
The support structure within the skydiving community, and particularly Perris Valley Skydiving, is truly remarkable. In times of need it is often that our family is called upon to unite for emotional support, financial support, and this time, a cure. Having raised a significant sum of money for Families of SMA, once again, we can say we were there for our skydiving brothers and sisters; once again we can say we made a difference in the lives of others.
Unfortunately, on December 12th, only 2 weeks after the fundraiser, Zachary Span lost his battle with SMA and was taken from this world all too soon. But with the assistance of his loving family and such a supportive community, his legacy leaves behind a contribution to the fight against this disease to better the lives of other SMA families like the Spans. If you would like to make a contribution to this effort, donations can be made in the name of Zachary Span at FSMA.org.
Zachary Span, you will be missed…
The Felix family of Arizona had a donation made on their behalf with true, deep meaning attached to it — a donation in memory of their daughter Alexa’s great-grandmother, Edna Dahlstrom, who passed away on December 1, 2009.
In Jaci Felix’s words:
This donation is in memory of Alexa’s great-grandmother, Edna Dahlstrom (1/18/1920-12/1/2009). Edna passed away while Alexa was in the PICU a few weeks ago. My father’s (Roger Dahlstrom) co-workers from Banner Health all chipped in and wanted the money to be donated in memory of Edna to benefit SMA. Alexa never got to meet her great-grandmother due to both of them having health complications. Alexa has another Angel watching over her and all of her SMA friends. May Edna Rest In Peace.
Congratulations to California Stem Cell, an Irvine, California based privately held company developing the stem cell-derived motor neuron replacement for Dr. Keirstead’s groundbreaking SMA stem cell program, on closing this critical Series B round of funding. Another hurdle overcome and another step closer to getting this promising research to human clinical trials as safely and efficiently as possible.
Click here or on the image below to read the full press release…
The Wright-Beasley family of Texas, whose beautiful son, Eli, passed away from SMA Type 1 last January, has surpassed their personal goal of raising $5,000 for Unite For The Cure for Dr. Keirstead’s SMA stem cell program. With the help of friends and with hard work, the Wright-Beasley family did what they initially were unsure they could do and we are so, so proud of them. Congratulations to the Wright-Beasley Family on this inspiring achievement!
On November 20, 2009, Gwendolyn Strong’s amazing Gramma (Bill’s mom) and their dear friends, Jeff and Kris Hanson, hosted the First Annual Golf For A Cure tournament at Sterling Hills Golf Club in Camarillo, California to benefit the Strong’s Unite For The Cure commitment. The tournament was a ton of fun on an absolutely beautiful day and was a huge success raising over $6,000 for Dr. Keirstead’s promising SMA stem cell program.
The Golf For A Cure tournament was more than I could have ever expected. Hoping to get 18 tee sponsors — we got 30! Hoping to get 40 golfers — we got 80! And we had such a good time that day from start to finish. It was truly an uplifting and exhilarating day. Not only did we raise awareness of SMA but we exceeded our fundraising goal as well. It is a wonderful feeling knowing we accomplished so much through one simple event, Golf For A Cure!
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…
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!!!
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
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.
Posted in Uncategorized
