Richmond Family Learns, Lives, And Grows Despite Struggles

August 25, 2012

WTVQ-ABC | August 24, 2012 | By Amanda Stevenson

[VIDEO]: Richmond Family Learns, Lives, And Grows Despite Struggles

Danika Stockings, 15, has spinal muscular atrophy (SMA) a disease that causes muscle damage and weakness.

Unfortunately, it gets worse over time–as a child, Danika could walk with braces, but lost the strength to do it over time.

Now, the teen’s confined to a wheelchair.

Showering, dressing, and even getting up in the morning are all processes that others have to help her with.

Danika was adopted by the Stockings from Russia when she was 11 months old.

They brought her home on Christmas Eve…a running joke in the family that she was that year’s Christmas gift.

Four months later, though, she was diagnosed with SMA.

Nearly fifteen years later, she’s completely used to the disease…and strives to make her life as normal as possible.

Her younger sister, Ellie-Kate, even helps, offering to take the responsibility of caring for her once she’s old enough to do so.

So even despite the hardships of having SMA, Danika and family wouldn’t have it any other way.

You can help people like Danika in your own community by donating during the MDA “Show of Strength” on Sunday, September 2nd from 8 p.m. until 11 p.m right here on ABC 36.

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FightSMA Announces Introduction in the House of Representatives of the National Pediatric Research Network Act (NPRNA)

July 21, 2012

FightSMA Announces Introduction in the House of Representatives of the National Pediatric Research Network Act (NPRNA)

Press Release | July 20, 2012

ALEXANDRIA, VA. July 20, 2012—A bill to authorize the National Institutes of Health (NIH) to support the creation of up to 20 pediatric research consortia focused on diseases such as spinal muscular atrophy (SMA) was introduced yesterday in the U.S. House of Representatives.

The bipartisan bill, called the National Pediatric Research Network Act (NPRNA) is being introduced by Representatives Cathy McMorris Rodgers (R-WA) and Lois Capps (D-CA). It is designed in part to help achieve the goal of securing additional federal resources to accelerate clinical trials for spinal muscular atrophy (SMA).

“We are thrilled about this bill which is the result of the dedication of so many in the SMA community,” said Martha Slay, founder and immediate past president of FightSMA. “Legislation to benefit SMA is at the heart of the FightSMA mission.”

“Over the past year, FightSMA has worked with our champions in the Congress, Representatives McMorris Rodgers and Lois Capps, on this important legislation. With the support of longtime FightSMA ally House Majority Leader Eric Cantor (R-VA), these two key members of the House Energy and Commerce Committee’s Subcommittee on Health have collaborated to craft bipartisan legislation that will advance translational research and clinical trials for a variety of rare pediatric disorders, with SMA serving as a model disease,” said Ms. Slay.

“I am proud to join Rep. Capps in introducing the very important National Pediatric Research Network Act. She has been an instrumental leader in the fight to promote pediatric research for genetic disorders, especially spinal muscular atrophy and Down syndrome,” said Rep. McMorris Rodgers. “As the mother of a son with Down syndrome, I am confident this legislation will go a long way to improving the lives of those with genetic disorders. I look forward to working in a bipartisan way to make sure this bill is signed into law.”

“I am proud to co-author this legislation with my friend (Rep.) Cathy McMorris Rodgers, which would go a long way to increasing and improving research on children’s illnesses–especially rare and complex diseases–and developing new treatments to fight them,” said Congresswoman Capps. “Every parent’s worst fear is that their child becomes sick, and we owe it to all parents to do what we can to fight childhood illnesses. I would also like to thank my constituents, Bill and Victoria Strong, for their tireless work on behalf of their daughter, Gwendolyn, and all children with Spinal Muscular Atrophy and other rare diseases. Their dedication to fighting this terrible disease has been an inspiration for me and a driving force behind this bill,” said Congresswoman Capps.

Click HERE or on the image below to read more…


theGSF and FightSMA Award $100,000 Spinal Muscular Atrophy Research Grant

December 16, 2011

theGSF.org | December 15, 2011

The Gwendolyn Strong Foundation (theGSF) and FightSMA are excited to announce a $100,000 award to Dr. Monique A. Lorson and University of Missouri in support of Dr. Lorson’s research focused on developing a large animal model of Spinal Muscular Atrophy (SMA).

Currently, no large animal model of SMA exists and the goal of Dr. Lorson’s research is to develop the first ever pig based model of SMA to be used by the broad, global SMA research community and other research groups to allow them to more efficiently and effectively move promising research from the bench to bedside. In short, this is a very exciting program that has the potential to have a material, positive impact on the future of SMA research in almost every category (e.g. gene therapy, compounds, antisense oligonucleotides).

Click HERE or on the image below to read more…


FightSMA to host panel discussions on spinal muscular atrophy

April 30, 2011

FightSMA to host panel discussions on spinal muscular atrophy

News Medical | April 30, 2011

International non-profit organization FightSMA will be hosting highly respected experts from across the country on Thursday, May 5, 2011 for a series of panel discussions, Thriving with SMA: LIVE! This panel is a unique, one-of-a-kind series of presentations from influential leaders in the fields of pulmonary issues, orthopedics, nutrition, neurology and clinical trial.

FightSMA will be joined by families, friends, healthcare professionals and more for this historic presentation. In addition, the panel will be offered online with free and unlimited access via the web broadcasting service, UStream. The panel will be live broadcast from 9:00am EDT to 2:00pm EDT on the FightSMA website (www.fightsma.org). Attendees can register for the webcast, as well as submit questions for the panelists by visiting the FightSMA website and pointing towards the “Celebrating 20 Years” block.

“There are hundreds of families across the U.S. and across the globe who simply cannot physically attend the conference for various reasons,” said FightSMA President and founder, Martha Slay. “So, on May 5, we’re bringing the conference to them! Families will be able to ask questions of SMA experts in the areas of nutrition, exercise, pulmonary issues, and clinical trials. This is unprecedented and it’s free, and can be attended from your own computer. Go to www.fightsma.org for more details.”

Click HERE or on the image below to read more…


FightSMA Celebrates 20 Years Fighting Spinal Muscular Atrophy; Gears Up for Annual Conference in DC

April 29, 2011

FightSMA Celebrates 20 Years Fighting Spinal Muscular Atrophy; Gears Up for Annual Conference in DC

PR Newswire | April 28, 2011

FightSMA will be welcoming elite researchers and scientific professionals, as well as families and friends in the SMA community, to the L’Enfant Plaza Hotel May 3-6, 2011 in Washington, D.C. The group, which was founded in 1991, is celebrating its 20th anniversary this year. To date, FightSMA has raised more than $7 million for SMA research and boasts 19 chapters in the U.S. and Canada.

The centerpiece of the Conference will be the Thriving with SMA: LIVE! panel discussions on Thursday, May 5, a unique, one-of-a-kind series of presentations from influential leaders in the fields of pulmonology, orthopedics, nutrition, neurology and clinical trial. In addition, FightSMA will be offering free and unlimited access to the Thriving with SMA panel via the web broadcasting service, UStream. The panel will be live broadcast from 9:00am EDT to 2:00pm EDT on the FightSMA website (www.fightsma.org). Attendees can register for the webcast, as well as submit questions, for the panelists by visiting the FightSMA website and pointing towards the “Celebrating 20 Years” block.

Click HERE or on the image below to read more…


Hanover Girl Raps For Easter Seals

April 5, 2011

Hanover Girl Raps For Easter Seals

Bayshore Broadcasting | April 5, 2011 | By Robyn Garvey

Click HERE to read more and listen to Natalie’s awesome rap!

11 year old Natalie McDonald of Hanover is taking on a fun new project — and she is hoping Grey and Bruce residents will help her out.

Natalie has created her own rap song, explaining why she loves going to Easter Seals camp.

Her rap song is on YouTube and you can find it by typing in Easter Seals Rap.

Natalie’s Mom Christina McDonald is encouraging residents to visit the site and push the LIKE button.

The top video’s will appear on the Easter Seals Telethon on Sunday April 10th.Voting closes on Thursday April 7th.

McDonald says the project is her family’s way of sharing why they love Easter Seals Camp.

She says it’s the one place where children with disabilities can go and forget about their challenges and instead focus on having fun and being a kid.

Natalie has been going to Easter Seals Camp for years.

She suffers from Spinal Muscular Atrophy a genetic disease that attacks the nerve cells in the spinal cord.

Click HERE or on the image below to read more…


Party With A Purpose To Help Andrew Fight SMA

March 24, 2011

Party With A Purpose To Help Andrew Fight SMA

The 2nd Annual Party With a Purpose to help Andrew Creighton and FightSMA (Spinal Muscular Atrophy) Mechanicsville will be held from 7 to 11:30 p.m. Friday, April 8, at Plant Zero at Zero E. 4th St. in Richmond.

Each person is asked to raise a suggested $100 to help continue the fight against Spinal Muscular Atrophy.

Party-goers will enjoy an evening filled with cuisine from White House Catering, beverages, dancing, a silent auction and raffle.

Entertainment is being provided and donated by Mechanicsville DJ, Bill “Everyday” Holliday.

Click HERE or on the image below to read more…