Unite For The Cure » Milestone

Unite For The Cure Raises $145,000+ for Dr. Keirstead, Accelerates Promising Stem Cell Program

Victoria Strong — Sat, 06 Feb 2010 16:03:50 +0000

In only four months and with fundraisers organized by over twenty families and their friends across the globe (literally), “Unite For The Cure” (Unite) met and surpassed their goal of raising $100,000 for Dr. Keirstead’s promising SMA research. In fact, over $145,000 — yes, one-hundred-forty-five-thousand-dollars — was donated to Families of SMA (FSMA) through Unite efforts earmarked specifically to accelerate Dr. Keirstead’s stem cell research to human clinical trial. This is an enormous accomplishment in and of itself in such a short period of time, but when you take into account that every single one of these remarkable families is either caring for a terminally ill child or grieving the loss of their precious baby — it is nothing short of miraculous!

Each of these inspiring Unite families has poured their heart and soul into fundraising, has shown tenacity and dedication, has asked friends and family to be involved, and has campaigned tirelessly to get Dr. Keirstead the money he needs. In November 2009, Dr. Keirstead’s SMA stem cell program was named by Esquire magazine as a “Project That Will Change Science Forever”. We truly hope that this will prove to be the case and that each of us will have had a material impact on accelerating this groundbreaking, game changing science into the history books.

A message from Kenneth Hobby, President, Families of SMA:

Thank you all for the tireless efforts involved here to support this program and our mission to develop a cure. Thanks to you we will be one step closer.

Reaching $100,000 raised is a tremendous milestone to be able to hit. I think we all have that additional bit of extra hope now in the community with the funds you have all raised to help move us forward.

The initial investment from Families of SMA in stem cell research was in 2000 and this funded efficacy studies using motor neurons from mouse stem cells. Over the following years additional funding lead to the first, highly-pure therapeutic population of human motor neurons for cellular replacement therapy for SMA. Click here for full details on the program.

The team involved in this collaboration includes the laboratory of Dr. Keirstead at The University of California, Irvine, the laboratory of Dr. Kerr at Johns Hopkins University, California Stem Cell, Inc., and FSMA.

In October of this year we completed a pre-Investigational New Drug (IND) Meeting with the FDA. Click here for details of this recent meeting. This meeting gave us guidance from the FDA on the clinical and regulatory pathway and requirements for submission of an IND application to be able to initiate human clinical trials.

The stage of the program we are now beginning, and the work and studies that all of your efforts are helping to support, is the preparation of the final IND application. This involves a lot of regulatory work and applications, and several experiments and tests showing that manufacturing of the motor neurons to be used in the clinical trials is reliable and scalable. The final IND application that is given to the FDA is meant to comprise all of the information that has been generated for the program to date. This can easily run into many thousands of pages in length. This application is submitted to the FDA, which then has 30 days to review the information and then give a final say on whether we are clear to start the first clinical trial.

At this final stage just before clinical trials nothing is yet guaranteed. Programs can and often do get put on hold by the FDA at this stage. This particular program looks to not only be the first new IND application put into the FDA for SMA, but also one of the first for a stem cell therapy for any disease! So, the unknowns and risks are still high, but so are our hopes that we will be successful in getting approval and then move forward into clinical trials with patients.

Thank you all so much for all the amazing energy you have put in to support this program and to help all in the community.

Very best,

Kenneth Hobby, President
Families of SMA

And a message from Dr. Hans Keirstead:

I am excited to let you know that we have finished all of the animal work that is required by the FDA, covering both efficacy and safety. We are currently writing up all of the results in a manner that the FDA requires for submission of an IND. We are also completing work to document the cell preparation and shipping procedures, and conducting experiments to ensure that those procedures do not adversely affect the cells. Lastly, we are preparing the IND.

FSMA, and many families, have generously contributed to the funding of many of our research needs. However, many non-research tasks must be preformed before we can submit our IND. These studies include the cell preparation and shipping procedures mentioned above, and the IND ‘paperwork’ preparation costs.

Thank you so very much Unite families for all of your support. We simply could not have done this without you, and your ongoing support is nothing short of enabling this research to move forward into the clinic.

Hans S. Keirstead, Ph.D.
University of California, Irvine – Reeve-Irvine Research Center
Sue and Bill Gross Stem Cell Research Center

At this point, we can all know and be proud of the fact that, as one united community, we’ve helped accelerate this program. We now simply have to wait for the IND process to play itself out, the science to prove itself in humans, and — hopefully — pave the way for getting this treatment to children as safely and efficiently as possible.

From the bottom of our hearts, thank you Unite families. It has been an incredibly inspiring experience working with you and we hope that each of you found it to be motivating and uplifting. This has been a wonderfully successful campaign and we are so proud of every single effort that has helped make this such a huge success — a $145,000+ collective success!

As we intended Unite to be a one-off campaign, we will be closing Unite down (although this site will live on in perpetuity in its current form). However, we believe this type of earmarked, directed fundraising serves an enormous benefit to both fundraisers and researchers and in the coming months we plan to launch a similar program. After all, it is your money — you should decide where it goes. If you are interested in joining this effort, please contact us or stay tuned for the big launch in the coming months. Together we will see SMA cured!

The McClay Family
Raised over $16,700!

The Span Family
Raised over $10,700!

The Potter/Reilly Families
Raised over $10,000!

The Schmid Family
Raised over $9,500!

The Marshall Family
Raised $9,000!

The Strong Family
Raised over $8,300!

The Gooden Family
Raised over $7,700!

The Pringle Family
Raised over $7,700!

The Butler/Trakas Families
Raised over $6,900!

The Gustafson Family
Raised over $6,700!

The Lunt Family
Raised over $6,600!

The Lucas Family
Raised over $6,000!

The Zahn Family
Raised $6,000!

The Coleman Family
Raised over $5,200!

The Wright-Beasley Family
Raised over $5,000!

The Ragland Family
Raised over $5000!

The Howell Family
Raised $5,000!

The Calafiore Family
Raised over $4,500!

The Felix Family
Raised over $4,000!

The Greene Family
Raised over $1,400!

The Lovelace Family
Raised nearly $1,000!

An additional $2,000 was raised in private donations sent directly to Unite from individuals, ranging from $25.00 to $500.

Calafiore Family Surpasses Personal $5k Unite Goal

stronwi — Fri, 08 Jan 2010 15:00:07 +0000

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.

Unite For The Cure: Span Family Skydiving Fundraiser Honoring Zachary Span

stronwi — Tue, 05 Jan 2010 15:00:52 +0000

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…

Wright-Beasley Family Surpasses $5,000 Personal Milestone

stronwi — Fri, 18 Dec 2009 20:37:36 +0000

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!

Coleman Family Reaches $5,000 Goal

stronwi — Mon, 07 Dec 2009 15:00:14 +0000

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

stronwi — Sat, 05 Dec 2009 23:25:29 +0000

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

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

stronwi — Wed, 02 Dec 2009 18:23:29 +0000

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,

Victoria Strong — Tue, 01 Dec 2009 15:00:08 +0000

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

Victoria Strong — Mon, 30 Nov 2009 01:30:50 +0000

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!

Uniters Keep Inspiring, Pass $80,000 Milestone!

stronwi — Wed, 25 Nov 2009 19:41:59 +0000

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…