All too often, news in the SMA community is full of sadness and heartache as spinal muscular atrophy (SMA) takes its toll. This makes celebrating happy stories that much more important. Here are two such stories.

The Children’s Wish Society of Malaysia (CWS) and MPH Group of Companies have made 13 year old Alicia Loh’s dream come true. Diagnosed with type 2 SMA ten years ago, Alicia has been enjoyed reading books and writing short stories. While visiting America for spinal surgery, Alicia wrote her own book entitled The Last Chapter about a girl trying “to understand the meaning of life.” Now, this book will be available for sale in MPH bookstores around Malaysia. For the full story, click here.

In Connecticut, the Takacs family received an amazing Christmas gift. A community of strangers came together to create a special portable bed for 4 year old Ethan who has type 1 SMA and had outgrown his crib. Ethan’s dad had gone to Hemingway Custom Cabinetry to investigate how much a special bed would cost to make. After learning more about Ethan and his needs, Hemingway Custom Cabinetry and their vendors donated time and materials to create the bed which they delivered last week. To read more, click here.

If you have more uplifting stories to share as we move into the new year, share them with FightSMA on Facebook or Twitter.

There is someone in the circles of people closest to you who would be delighted - in fact, honored - to make a major gift to FightSMA (www.fightsma.org). This may be a distant relative, a college friend who has “done well” or a business relationship who has become a friend.

For a person of means, a gift of $50,000 or even $100,000 is realistic. It’s not realistic for many of us (okay, pretty much ALL of us), but for someone who CAN make such a gift, it’s a blessing to them to make it. We have a responsibility, to the children we love and to the children we’ve met who are fighting SMA, to push through our own feelings of awkwardness or inadequacy - and we all have those feelings…all of us - and MAKE THE ASK.

So, take a deep breath. Or exhale a sigh of resignation…and read on.

And, hey, why are we on this planet anyway? To live cautiously and timidly? Are we supposed to end your days, saying “I should have…”

Hardly.

Listen to Shakespeare:

There is a tide in the affairs of men,
Which, taken at the flood, leads on to fortune;
Omitted, all the voyage of their life
Is bound in shallows and in miseries.

So, the “Three Questions to Ask Yourself to Reach the Miracle.”

1. Who have I avoided sitting down with and making the hard ask, even though I KNOW they can make a very large gift? You may have asked them before, and after an uncomfortable and long silence, a few avoided glances, and some clearing of the throat, they said they’d think real hard about it and that was the last of it. It may have been five years since you’ve brought it up. But you need to do it again. They may have softened. They may be in a better place to consider it. If you don’t ask, you don’t get. Think about this person, then think of an approach. Talk through your approach with someone who knows you well and can bolster your confidence.

2. If I made a list of possible people to contact, have I exhausted all my circles? I bet you can come up with three good, realistic prospects. Think back to high school. Did you know that the quiet kid in the cadet corps who couldn’t play Taps has made several million dollars on Wall Street? Find him. Get back in touch. How about Uncle Harry? He just sold his carpet cleaning company. It wasn’t huge, but he cleared about $1.5 million. What’s he going to do with the money? Let the IRS have it? Stop him from dumping it down that rat hole. And what about acquaintances at church, in the Rotary? At work? Make a list of 10 relatives. Who do THEY know?

3. Have you visualized the amount of money you’re going to get? Think about fifty one-thousand dollar bills. Think hard about them. See those crisp, pretty bills in a suitcase, or in a big grocery bag. Enjoy the fact that you’re going to get someone to give them to you, for the most important cause of your life. In your mind, toss the bills up into the air and watch them flutter to the ground. Giggle about it. IT’S JUST MONEY, AND YOU CAN GET IT. Figure out an amount you want to ask for and make it feel real.

You can do this.

Congratulations to our friends at the Gwendolyn Strong Foundation. Their phenomenal outreach across the internet successfully garnered enough votes for the Foundation to be named to Top 100 list in the Chase Community Giving Campaign on Facebook. This honor comes will a $25,000 award and the chance to move on to round two where they will compete for a $1 million grant.

From the Gwendolyn Strong Foundation:

December 16, 2009
Gwendolyn Strong Foundation Top 100 Charity, Wins $25,000 Grant From Chase Facebook Campaign

This is truly unbelievable, incredible!

Today, we received news from Chase that the Gwendolyn Strong Foundation was selected as one of the top 100 charities, based on YOUR votes, in their Chase Community Giving campaign on Facebook. Thus, GSF will receive a $25,000 grant from Chase and will advance to round 2 of the campaign with a chance to win as much as $1 Million.

We’re still gathering information and to be honest it’s still sinking in, but we wanted you all to know this amazing news right away since none of this would have been possible without each and every single one of your votes and your personal, passionate efforts to prop the Gwendolyn Strong Foundation up on your shoulders. This is another humbling example of how this vibrant, active SMA community and every person that this horrible disease touches can collectively accomplish anything that we put our minds to as one, united, motivated voice.

We are excited to be donating 100% of this grant to Dr. Hans Keirstead’s promising SMA stem cell program at UC Irvine. As most of you know, this groundbreaking research has the potential to cure SMA and have a material, positive impact on all science forever. We know that this grant will help Dr. Keirstead and his team accelerate the process to get this treatment to human clinical trials as safely and efficiently as possible and to the children in need of a cure.

From the bottom of our hearts, thank you, thank you, thank you to each and every one of you. Now, on to ROUND 2! As a community, let’s go get that $1 MILLION to help CURE SMA once and for all!

Click here to go to the Chase Community Giving campaign on Facebook to see the top 100 charities.

Click here to read the press release from Chase.

Don’t know what spinal muscular atrophy (SMA) is? Learn more here.

If you were up late last night, you might have notice a familiar phrase on a t-shirt worn by one of the musical guests on NBC’s Late Night with Jimmy Fallon. Lead singer J. Robbins is the guitarist and lead singer of Jawbox, which made its first appearance since 1997 during the show. Robbins’ was front and center, wearing a Fight SMA t-shirt! His son, Callum, has spinal muscular atrophy, and in the past few years J. has become a great voice in the SMA community.

If you missed the performance, you can watch it below!

This request comes from Bill and Victoria Strong of the Gwendolyn Strong Foundation and Neda Zadeh, M.D., Medical Genetics Fellow at Stanford University. They are reaching out to mothers of children with spinal muscular atrophy to ask if they would participate in a study that “may help pave the way for SMA carrier screening to be offered to more women.”

From: Neda Zadeh, M.D. — To the Claire Altman Heine Foundation:

You are invited to participate in a research study on the possible association between Nuchal Translucency (NT) measurement and fetuses affected with Spinal Muscular Atrophy (SMA). Our goal is to determine whether there is an association between increased NT measurements and SMA. If so, diagnostic testing for SMA may be offered to women with increased NT and no evidence of a chromosome abnormality of the fetus. We are only recruiting mothers of children confirmed to have SMA by molecular testing.

Involvement in this study is entirely voluntary and confidential. It will require your permission to access particular medical records for both you and your child. Your participation will not involve invasive procedures such as blood draw or tissue sampling. There will be no monetary compensation for your participation.

If you are interested in participating, or would like to hear more about this study, please contact me at (650)721-1439.

Sincerely

Neda Zadeh, M.D.
Medical Genetics Fellow
Stanford University
Division of Medical Genetics

Friends old and new gathered on November 21, 2009 at Richmond’s newest waterfront restaurant, the Boathouse at Rocketts Landing, for the 2009 FightSMA Fall Party to celebrate and help raise awareness and critical research dollars for spinal muscular atrophy.

Guests at the party enjoyed live music by local Richmond favorite, DJ Williams Projekt, while sipping cocktails and enjoying Boathouse specialty hors d’oeuvres. When they weren’t on the dance floor, guests were able to bid on a robust variety of silent auction packages provided by:

• Plus1Tickets
• By Invitation Only
• DowntownShortPump.com
• Lemaire
• Roan boutique
• Heist jewelry
• MacLaren Jewelers
• real life studios
• Hayes & Fisk: The Art of Photography
• Appliance Solutions
• Visual Arts Center of Richmond

The Boathouse at Rocketts Landing and Shockoe Bottom’s Frame Nation provided gift certificates for the raffle.

When guests at the Fall Party wanted to let their hair down, they grabbed their friends and climbed into the on-site photo booth provided by Virginia Photo Booths and More to create a memorable keepsake to take home from the party. One guest said, “the photo booth was such a cute touch and so nice that it was customized with the event info.”

FightSMA President and Co-Founder, Martha Slay, briefly addressed the crowd to thank them for their support, update them on the progress being made, and encourage them the continue their efforts. A portion of her speech can be heard in the video recap of the event.

It was a fantastic and fun evening, and most importantly, for a wonderful cause: to help fight spinal muscular atrophy. Another attendee declared, “lovely evening, gracious hosts, beautiful people, a gorgeous setting and a great cause. The perfect evening. You have done it again!”

Still photography provided by Sam Perry Photography.

From the Washington Post:

NIH authorizes use of first human embryonic stem cells under new policy

By Rob Stein
Washington Post Staff Writer
Wednesday, December 2, 2009; 1:01 PM

The Obama administration on Wednesday approved the first human embryonic stem cells for experiments by federally funded scientists under a new policy designed to dramatically expand government support for one of the most promising but also most contentious fields of biomedical research.

The National Institutes of Health authorized 11 lines of cells produced by scientists at the Children’s Hospital in Boston and two lines created by researchers at the Rockefeller University in New York. All were obtained from embryos left over by couples seeking treatment for infertility.

“This is a real change in the landscape,” NIH Director Francis Collins said. “This is the first down payment on what is going to be a much longer list . . . that will empower the scientific community to explore the potential of embryonic stem cell research.”

According to Johns Hopkins University Associate Professor of Neurology, Molecular Microbiology and Immunology, Dr. Douglas Kerr, author of multiple papers about embryonic stem cells and friend of FightSMA, “this is a significant event since it has really increased the number of embryonic stem cell lines available for researchers to study in understanding and ultimately treating human diseases.” He goes on to say, “It’s even more significant since the previously approved embryonic stem cell lines had a variety of problems including chromosomal abnormalities and culture conditions that would make them potentially unsafe in humans. These new ES lines don’t have those problems and this promises to advance research forward.”

To read the complete Washington Post article, click here.

To read the press release issued by NIH, click here.