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FightSMA moms fight for SMA Treatment Acceleration Act

Mon, 22 Oct 2007 10:23:00 -0400

On October 19th, the St. Petersburg Times ran an article about Trevor Smith and Laurie Elliot of the Tampa Bay chapter of FightSMA. Both Trevor and Laurie have urged Florida’s congressional representatives to support the SMA Treatment Acceleration Act.

From the article “Parents issue urgent plea to politicos”:

Thank God for the box of tissues. Trevor Smith couldn’t control her tears.

It could have been nerves. She was in Washington, D.C., without her husband or daughter for the first time.

Or maybe it was the gravity of what she had to tell C.W. Bill Young, the Bill Young, senior legislator known for getting the job done on Capitol Hill, face to face.

There was Trevor - 39-year-old wife of T.A. Smith, part-time sales rep for Kelly Services staffing agency and the mother of 6-year-old Joie - in a big, “stately looking” office.

She told Young about her daughter and about the disease that Trevor had never heard of until doctors diagnosed Joie. Spinal muscular atrophy, SMA for short, is the leading genetic killer of babies, according to the international nonprofit organization called Fight SMA.

On the Hill that day in April, dozens of regular people active in Fight SMA met with legislators or their aides. Laurie Elliott, whose 11-year-old daughter has the disease, had traveled from Hyde Park to sit across from Tampa’s own Rep. Kathy Castor.

They wanted to tell the people with political strength about an incurable disease that can lead to muscle weakness in children. They wanted to tell them that researchers think they can make a difference if they get more money for clinical trials and such.

To read the entire article, click here.

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Fighting Back Podcast #11: SMAsquerade 2007

Tue, 09 Oct 2007 15:04:25 -0400

It’s nearly time for SMAsquerade: Make Tracks!, presented by SunTrust! The fifth annual auction fundraiser held by Fight SMA is set for the evening of Saturday, October 13. This year’s auction items are VERY exciting. The live auction, presented by Dominion, features numerous once-in-a-lifetime experiences. The silent auction includes about a dozen wonderful items as well. Plus, there’s a very exciting raffle this year, with a mystery Tiffany box as a prize! It’s all for a great cause, obviously. Proceeds from the event go toward research into a cure for spinal muscular atrophy.

On this week’s Fighting Back Podcast, host Steve Mullen runs down how you can participate in the auction, even if you’re nowhere near the event location in Richmond, Virginia. He also interviews C.T. Hill — Mid-Atlantic Chairman, President, and CEO of presenting sponsor SunTrust Bank.

Links mentioned in this episode:
Information on SMAsquerade: Make Tracks!
Information on absentee bidding

To hear Episode 11 of Fighting Back, you have several options. You can listen using the Flash mp3 player above. Or, if you’re a fan of podcast RSS feeds, you can use the Fighting Back Podcast Feed in your favorite feed reader. If you’re an iTunes user you can subscribe and download via our iTunes store. Finally, you can, of course, download this episode using the link above.

To discuss this, or any, episode of Fighting Back, head to the Fighting Back Podcast Forum on the FighterMom Community. Or, leave us a voice mail message at our new voicemail hotline number – 206-222-1903. You can also leave a message in the form of a comment on this blog as well.

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Spinal Muscular Atrophy to be featured on FOX television series “House”

Mon, 08 Oct 2007 20:29:22 -0400

Spinal Muscular Atrophy will be in the spotlight in an upcoming episode of the FOX program House. The show that will air on Tuesday, October 9 will feature an adult character with Type 3 SMA.

One of the writers for House has a seven-year-old son with Type 2 SMA, and is very active in the Southern California chapter of Families of SMA. Families of SMA, Fight SMA, and the SMA Foundation, are working together for passage of the SMA Treatment Acceleration Act. The bill has been introduced in the U.S. Senate and House of Representatives. If signed into law, it would create a national clinical trials network for SMA.

This is a wonderful opportunity for viewers to learn more about a disease many know little or nothing about. Check your local listings, and be sure to tune in!

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SMA Community present at two upcoming meetings

Mon, 08 Oct 2007 12:18:56 -0400

FightSMA will be hosting booth #37 at the 36th Annual Child Neurology Society Meeting being held this week in Quebec City, Quebec. Doctors and researchers will receive general information about Spinal Muscular Atrophy, current and future clinical trials, and the SMA Treatment Acceleration Act. Also, visitors to the booth will have opportunities to discuss with FightSMA Scientific Advisor Dr. Alex MacKenzie.

During the Society for Neuroscience’s 37th Annual Meeting in November, a satellite symposium on SMA entitled “NMJ in spinal muscular atrophy - the chicken or the egg?” will be held Monday, November 5, 2007 at 6:30pm in the Annie Room of the Manchester Grand Hyatt San Diego. This event is being sponsored by Families of SMA, FightSMA, MDA, and SMA Foundation. For more information, meeting attendees can stop by the SMA organizations’ booth, #4301.

A list of more upcoming professional meetings can be found at the FightSMA website.

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Time is running out for SMAsquerade 2007 absentee bidding!

Fri, 05 Oct 2007 10:05:49 -0400

Fight SMA’s yearly fundraiser, SMAsquerade, is coming up on October 13, and time is running out to submit your absentee bid for some of the INCREDIBLE items we have available this year. Absentee bids must be submitted via email or fax by 5:00 p.m. on October 12. All proceeds from the auction will go toward finding a cure for spinal muscular atrophy, the leading inherited killer of children under two.

Here’s a look at some of the items up for bids at SMAsquerade: Make Tracks!

Corporate box seats to the 2008 Kentucky Derby and Kentucky Oaks!
An eight-day whale tracking adventure in the Gulf of California, accompanied by a National Geographic Senior Editor and Photographer!
An amazing package trip to Nashville during Christmas 2007, including a three night stay for four at the Nashville Opryland Resort!
A 10-day stay in a privately-owned hacienda in Clearwater, Florida!
MUCH, MUCH more!

More details, plus a video of the beach house in Florida, are available at the SMAsquerade 2007 page on the Fight SMA website. Absentee bidding details are available here.

SMAsquerade 2007 is presented by SunTrust!

Please join in the fun!

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Fight SMA Canada to Hold SMA Conference

Wed, 03 Oct 2007 11:06:46 -0400

Fight SMA’s Canadian chapter is preparing to hold a conference of spinal muscular atrophy parents and researchers from Canada. Fight SMA Canada, otherwise known as Tori’s Buddies, is hosting the event at Bloorview Kids Rehab in Toronto. Featured speakers will include:

Dr. John Bach
Brian Weaver
Dr. Alex MacKenzie
Dr. Ben Alman
Pat McKeever

Topics on the agenda include respiratory care, updates on SMA research, orthopedic issues, and strategies for coping.

More information is available on the Tori’s Buddies chapter page. You can also view and print a PDF version of the agenda and registration form.

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FighterMom program profiled in USA Today newspaper!

Fri, 28 Sep 2007 09:59:28 -0400

We’re very excited around here this week, because the FighterMom program was profiled in an article in USA Today, the one of the nation’s largest newspapers! The story was a sidebar to an article about Shea Megale, a little girl from Northern Virginia whose stories about her assistance dog will be published and sold at FAO Schwarz.

Here’s an excerpt from the sidebar about the FighterMom program:

Martha Slay stepped up to fight for her son when he was diagnosed with spinal muscular atrophy (SMA) in 1987. Now she spreads her lessons learned to other mothers who want to fight for their children.

Fighter Mom, a program Slay started in 2006 almost 20 years after founding FightSMA with her husband, Joseph, is designed to help “mothers and others” who want to help find a treatment or a cure for their child’s disease.

To read the entire article, and learn about Shea Megale’s stories, read the entire article on the USA Today website.

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SMAsquerade 2007 interview on “At The Races”

Thu, 27 Sep 2007 14:24:19 -0400

Fight SMA’s upcoming SMAsquerade: Make Tracks! event was featured this week in an interview on the national radio show At the Races with Steve Byk. The program airs daily on Sirius Satellite Radio channel 126, and is all about the world of horse racing. Our Steve Mullen was interviewed on Tuesday, September 25th about one of the many exciting items available during the upcoming SMAsquerade live auction — six corporate box seats at next year’s Kentucky Derby!

The 5th annual SMAsquerade event takes place on October 13, 2007, and is Fight SMA’s signature fundraiser. It will feature live and silent auctions of amazing items. To learn more, visit the event page on the Fight SMA website.

To listen to the At The Races interview, visit the archives page on the show’s website. The interview took place at the end of hour one.

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Fighting Back Podcast #10 - Fighting Parry Romberg Syndrome

Wed, 26 Sep 2007 10:40:13 -0400

Welcome to episode 10 of Fighting Back, the podcast that features inspirational stories of people and families fighting serious or incurable diseases. I’m thrilled to reach this milestone episode, and we’ve found another true FighterMom, whose story is truly inspirational.

16-year-old Kelly Sperry was diagnosed with Parry Romberg Syndrome, a disease that causes a wasting of one side of the face, among other things. Not only is there no cure, doctor’s aren’t completely sure what causes it. Kelly’s parents, Donna and Jay, decided that they wanted to help provide support for other victims of this rare disorder. They founded the Parry Romberg Foundation.

In episode 10, host Steve Mullen interviews Donna Sperry. We hear more about the disease and how Donna is Fighting Back.

Links mentioned in this episode:
Parry Romberg Foundation (www.parryrombergfoundation.org)
Bully Police USA (www.bullypolice.org)

To hear Episode 10 of Fighting Back, you have several options. You can listen using the Flash mp3 player above. Or, if you’re a fan of podcast RSS feeds, you can use the Fighting Back Podcast Feed in your favorite feed reader. If you’re an iTunes user you can subscribe and download via our iTunes store. Finally, you can, of course, download this episode using the link above.

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Consensus Standard of Care Released for Spinal Muscular Atrophy

Thu, 13 Sep 2007 20:54:34 -0400

We’re very excited to announce that the Consensus Statement for Standard of Care in Spinal Muscular Atrophy has been published in the August 2007 supplement of the Journal of Child Neurology. The recommendations in the document were prepared by an an international body of clinical experts. The panel worked with more than 60 spinal muscular atrophy experts in the field to achieve consensus on 5 care areas: diagnostic/new interventions, pulmonary, gastrointestinal/nutrition, orthopedics/rehabilitation, and palliative care.

To read the document, download it here in PDF form.

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SMA Project RFP for Pre-IND Services - Supporting Docs Now Available

Tue, 11 Sep 2007 09:26:55 -0400

From the SMA Project:

Dear Colleague,

We have now posted the Supporting Documentation (including the Subcontract Agreement) for the SMA Project (http://www.smaproject.org) Request for Proposals (RFP) LD-090707. This RFP seeks to identify facilities to conduct preclinical testing of chemical compounds with the ultimate goal of submitting an Investigational New Drug (IND) application to the U.S. Food and Drug Administration (FDA). We have also posted an updated version of the RFP (Attachment B in the RFP has been updated).

The RFP and Supporting Documentation can be accessed through the Solicitations page of the SMA Project website at http://www.smaproject.org/solicitations.html. Proposals are due by 3 p.m. Eastern Time on October 5, 2007.

Studies to be conducted under the resulting contract will include preclinical safety, toxicology, pharmacokinetic/dynamic, and biodistribution studies with candidate small molecule compounds that act as therapeutic agents for spinal muscular atrophy (SMA). While a broad range of Good Laboratory Practice (GLP) and non-GLP studies is anticipated, capability to conduct studies according to GLP is required. Science Applications International Corporation (SAIC), on behalf of the Government, shall supply the Offeror with a small amount of each candidate therapeutic compound. For certain compounds provided to the Contractor, SAIC may request a comprehensive Product Development Plan for services to be provided by the Contractor. Facilities will be evaluated on their past experience in preclinical, IND-directed small molecule development, as well as the proposed schedule and cost of studies required.

The National Institute for Neurological Disorders and Stroke (NINDS) (http://www.ninds.nih.gov/) launched The SMA Project: A Collaborative Program to Accelerate Therapeutics Development for Spinal Muscular Atrophy in September 2003. This program funds milestone-driven research aimed at identifying and rapidly developing a treatment for SMA, a paralyzing neurodegenerative disease of childhood.

National Institute of Neurological Disorders and Stroke

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New Interventional Trial Studies Presymptomatic Infants with SMA

Wed, 29 Aug 2007 10:13:40 -0400

FightSMA is funding a new study called “Prospective Phase I/II Study to Evaluate Effects of Sodium Phenylbutyrate in Pre-symptomatic Infants with Spinal Muscular Atrophy” or “STOP SMA” being conducted by the laboratory of Dr. Kathy Swoboda at University of Utah School of Medicine. The study will assess the safety, tolerability and potential efficacy of sodium phenylbutyrate (NaPB) in presymptomatic infants genetically confirmed to have SMA.

Sodium phenylbutyrate (NaPB) is a medicine that has been used for many years to treat patients with urea cycle disorders. Recent research suggests that NaPB may be able to prolong survival in animal models of motor-neuron disease. In addition, pilot data in human infants have suggested a possible benefit of early administration of NaPB. Since significant motor-neuron loss occurs in the first few weeks to months of life in the most severely affected infants, the earlier that NaPB treatment can be started, the greater the potential benefit in delaying onset and lessening severity of SMA symptoms.

For more information about this study, including eligibility criteria, and for links to other clinical trials, please visit the FightSMA website.

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Fighting Back Podcast #9 - An Interview With Disease Researcher Dr. Alex MacKenzie

Fri, 24 Aug 2007 10:44:02 -0400

This episode is a bit of a departure for the Fighting Back Podcast. We usually interview people and families fighting against serious diseases. We’ve spoken to a woman trying to raise the profile of SMA through a one-woman stage show, a mother starting a foundation to raise money for myotonic muscular dystrophy, a mother who launched what became a national organization to fight for orphan disease, and many more. This episode is a bit different, however. This time we’re talking to a man who is fighting diseases directly.

Dr. Alex MacKenzie is a pediatrician, spinal muscular atrophy researcher, and director of the Research Institute at Children’s Hospital of Eastern Ontario. In episode 9 of Fighting Back, host Steve Mullen talks with Dr. MacKenzie about SMA research and how it’s benefiting many other diseases.

To hear Episode 9 of Fighting Back, you have several options. You can listen using the Flash mp3 player above. Or, if you’re a fan of podcast RSS feeds, you can use the Fighting Back Podcast Feed in your favorite feed reader. If you’re an iTunes user you can subscribe and download via our iTunes store. Finally, you can, of course, download this episode using the link above.

If you have feedback, a comment or question, or are interested in having Fighting Back tell your story, please contact us via the Fight SMA contact page or leave us a voice mail message at our new voicemail hotline number – 206-222-1903. You can also leave a message in the form of a comment on this blog as well.

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FDA Grants Tikvah Therapeutics, Inc. Orphan Drug Status for SMA Treatment

Tue, 21 Aug 2007 13:17:20 -0400

Atlanta-based biopharmaceutical company Tikvah Therapeutics announced this week that it has received orphan drug status from the U.S. Food and Drug Administration for use of sodium phenylbutyrate as a treatment for spinal muscular atrophy (SMA). The orphan drug status gives Tikvah seven years of market exclusivity for use of phenylbutyrate for SMA treatment.

Findings from in vitro studies by Tikvah, as well as pilot clinical work, suggest that phenylbutyrate treatment in SMA patients may improve motor function.

Tikvah will be working in conjunction with the FDA, and collaborative clinical trial groups focused on SMA to develop well-controlled multicenter trials to fully evaluate sodium phenylbutyrate in the treatment of SMA. Tikvah Therapeutics is also supporting research on new diagnostic approaches and new therapeutic approaches to the treatment of SMA and allied neurodegenerative diseases such as ALS (amyotropic lateral sclerois) and MS (multiple sclerosis).

Click here to view Tikvah’s entire announcement.

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SMA Treatment Acceleration Act Introduced in U.S. House of Representatives

Mon, 06 Aug 2007 09:51:08 -0400

We are very pleased to announce that legislation to enhance federal support for Spinal Muscular Atrophy (SMA) research, H.R. 3334, “The SMA Treatment Acceleration Act”, has been introduced in the U.S. House of Representatives by Congressman Patrick Kennedy (D-RI) and Congressman Eric Cantor (R-VA). U.S. Senator Debbie Stabenow (D-MI) and Senator Johnny Isakson (R-GA) plan to introduce companion legislation in the Senate when Congress returns from its August district work period. On behalf of our organizations and the families affected by this deadly disease, we want to express our gratitude and thanks to Congressmen Kennedy and Cantor and Senators Stabenow and Isakson for their leadership.

SMA is the number one genetic killer of children under the age of two. It is an inherited disease that destroys the nerves controlling muscle movement, which affects crawling, walking, head and neck control, swallowing, and even breathing. Approximately one in 40 people, or approximately 7.5 million Americans, carry the gene mutation that causes SMA. Each child of two carriers of the mutant gene has a one in four chance of being afflicted by SMA.

Among more than 600 neurological disorders, SMA has been singled out by the National Institutes of Health (NIH) as the disease closest to treatment based on scientists’ advanced genetic understanding of the disease and a strong collaboration between families, federal agencies, and patient advocacy groups. Researchers have identified the gene responsible for SMA, as well as a disease modifying “back-up” gene that has opened the door to promising new treatment pathways. Research involving the modulation of genes stands to benefit not only SMA, but other genetic disorders, including Duchenne Muscular Dystrophy, Parkinson’s, and Alzheimer’s. In recent Congressional testimony by the NIH, it was noted that “research on SMA illustrates the path from gene to understanding to treatment.”

In order to build on the progress being made by investigators and bring treatments to children affected by SMA, a broad coalition of organizations, including FightSMA, Families of SMA, and the SMA Foundation, has united behind the SMA Treatment Acceleration Act, legislation aimed primarily at supporting a national clinical trials network for SMA.

Specifically, “The SMA Treatment Acceleration Act” provides for the following:

Federal support for a national clinical trials network for SMA;
Federal support to enhance the existing SMA patient registry and for expanded research on the epidemiology of SMA;
Establishes an SMA Coordinating Committee to include federal agencies, SMA researchers, and SMA families, which shall study barriers to development of SMA treatments;
Establishes a trans-Institute research collaboration at NIH under the Director to ensure that all relevant Institutes are contributing and collaborating on SMA research;
Requires the Secretary of the U.S. Department of Health and Human Services (HHS) to study and report to Congress on the use of incentives to promote SMA drug development among private industry;
Provides for the Secretary of HHS to establish a program to provide information and education on SMA to health professionals and the general public

Our organizations will be issuing a “Nationwide Call to Action” for all SMA families, researchers, and friends, to help engage every Member of Congress in support of the this bill and the great efforts of Congressmen Kennedy and Cantor and Senators Stabenow and Isakson.

Cynthia Joyce
SMA Foundation

Kenneth Hobby
Families of SMA

Martha Slay
FightSMA

NOTE: For more information on the “The SMA Treatment Acceleration Act” please contact any one of our Government Affairs staff:

Laura Breiteneicher
SMA Foundation
laurab@wswdc.com

Spencer Perlman
Families of SMA
spencer@fsma.org

Caroline Gibson
Fight SMA
carolinegibson@fightsma.com

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Fight SMA Releases New “Collateral Benefit” Disease Directory

Thu, 02 Aug 2007 10:00:37 -0400

There’s a new page in the Fight SMA Spinal Muscular Atrophy Guidebook that anyone who is interested in orphan disease research should review. The “Guidebook” is a one-stop compilation of information on SMA. Parents of newly-diagnosed children, and even those who have known about spinal muscular atrophy for some time, can use it to answer the questions they might have about SMA.

The new page in the Guidebook is the Directory of Diseases Benefiting from SMA Research. It’s a list of the more than 20 diseases that receive “collateral benefit” from breakthroughs in the search for a cure for SMA. The list includes well-known disorders such as Parkinson’s and Alzheimers, as well as those that are lesser-known, such as Batten Disease and Niemann-Pick Disease. Included in the directory are links to websites where information about the individual diseases can be found. Fight SMA is inviting anyone with websites about these diseases to submit their sites for possible inclusion in the directory.

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An Interview With Retiring NORD President and Founder Abbey Meyers (Fighting Back Podcast Ep. 8)

Tue, 31 Jul 2007 23:06:34 -0400

Abbey Meyers isn’t retiring completely, but she is going to take a little time for herself after nearly 25 years of fighting for diseases that many people didn’t seem to care about. Abbey is founder and president of the National Organization for Rare Disorders, or NORD. Recently she announced she’s stepping down from leading the group.

Fighting Back, a podcast with inspirational stories about people and families fighting serious or incurable diseases, had the pleasure of being able to interview Abbey. She talked about her history with NORD, her decision to fight when her son was diagnosed with Tourett’s Syndrome (she’s a FighterMom!), and where she thinks the organization is going in the next 10 years. Among her ongoing concerns is the lack of universal portable healthcare.

We salute Abbey Meyers, and thank her for the work she’s done for the orphan disease community.

To hear Episode 8 of Fighting Back, you have several options. You can listen using the Flash mp3 player above. Or, if you’re a fan of podcast RSS feeds, you can use the Fighting Back Podcast Feed in your favorite feed reader. If you’re an iTunes user you can subscribe and download via our iTunes store. Finally, you can, of course, download this episode using the link above.

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Parents Claim Some Improvement in Kids During Spinal Muscular Atrophy Clinical Trial

Mon, 30 Jul 2007 22:04:03 -0400

The Utah chapter of Fight SMA, Dylan’s Friends, alerted us an interesting article that ran recently in the Salt Lake Tribune. At least one parent whose child is participating in a clinical trial for a treatment for spinal muscular atrophy type 2 is reporting what she believes is some success. The trial, conducted by Salt Lake City neurologist Kathryn Swoboda, is looking into using the drugs carnitine and valproic acid to treat kids with the intermediate form of SMA. Slated to wrap up in November, the study will help determine whether the drugs help salvage the nerves of children who have Type 2 SMA.

The parent quoted in the article said her son was stronger and has better mobility than before starting the medication.

Here’s an excerpt from the article…

For the past six months, all 90 children participating in the study have been on the drugs. During the first six months, however, half were on placebos. Neither the patients and their families nor Swoboda know which children - at six sites around the country - received the drugs in the first six months.

Valproic acid, approved by the Food and Drug Administration to treat epilepsy, psychiatric disorders, migraine headaches and pain, has also been shown to increase the protein critical to the health of motor neurons, or nerve cells in the spinal cord. The carnitine - a nutrient that helps the body turn fat into fuel - replaces that which is depleted by the valproic acid.

You can read the entire article on the Salt Lake Tribune website.

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A New Trend Toward Playgrounds for SMA Kids and Other Wheelchair-bound Children?

Sun, 29 Jul 2007 15:24:08 -0400

Two wheelchair accessible playgrounds under construction doesn’t constitute a trend, but we hope it turns into one!

There have been two recent articles from west coast newspapers about towns building wheelchair-accessible play areas, citing SMA kids as examples of children who can’t utilize traditional playgrounds.

The first article, which ran in the Seattle Post-Intelligencer, tells of a play area in Rainier Valley that’s still under construction, and sounds wonderful…

After five years of work, The Seattle Children’s PlayGarden is quietly thriving with a new basketball court, wooden planting boxes full of strawberries, blueberries, tomatoes, cabbage, corn, beets and radishes, flower beds and picnic tables.

The garden, though, remains a work in progress. Designers have ambitious plans that go far beyond ramps and wheelchair-friendly wood chips. By 2009 they envision a fully accessible tree house, butterfly garden, marsh, classrooms, kitchen, rock scramble, sensory garden, orchard and, of course, a working garden.

It is a detailed plan to accomplish a simple goal of letting all children, those with disabilities and those without, enjoy a neighborhood park.

At many parks, 6-year-old Annie Jones can’t navigate steps up slides and needs a deep swing with a high back because she has spinal muscular atrophy.

“I don’t go on anything,” said Jones, who uses a motorized wheelchair, referring to older parks.

Yet, Jones is like any child. She plays ball with her two sisters, Claire and Lillian, and swings when she can find an appropriate set.

“I don’t see a whole lot of kids in wheelchairs, but I also feel they don’t come out to parks because there is not a whole lot for them to do,” said Annie’s mother, Diane Jones.

Once the PlayGarden is finished, Annie Jones will have plenty to do: work in its garden, play in its water installations and swing.

You can read the entire story at the Post-Intelligencer website.

Meanwhile, down the coast in Orange County, California, the Orange County Register has the story of Courtney Faye Smith, a 10-year-old little girl who asked for a place where she could play like the rest of the kids. The request came when she was four years old. After six years of debate and wrangling over the location, an animated playground called Courtney’s Sandcastle, will be under construction this fall…

The plan calls for two play structures – one, for ages 6-12, taking the form of a castle with a drawbridge and moat. The other, for ages 5 and under, will be in the form of a ship surrounded by an ocean, serpents and sand. The colored surfaces will be rubberized. The swings will have standard seats and special ones for those who arrive in wheelchairs.

In a sensory garden, plants will emit aromas when touched. There will be plants sheared into the shape of animals, a sand-digging area, interactive musical panels, wind chimes, a water sphere and a rock mountain that comes to life with sensor-activated water features and a dragon that breathes mist.

The land and some of the funding for the park is is being donated by SunCal, a developer building a nearby housing community. The park is expected to open by the fall of 2008. To read the whole story, visit the Orange County Register website.

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SMA College Student Graduates with Perfect Grades

Sun, 22 Jul 2007 00:36:56 -0400

A truly amazing ran this week in the Catonsville (MD) Times about Kavita Krishnaswamy, who recently graduated from the University of Maryland, where she majored in computer science and mathematics. What’s amazing about the story is that she had a perfect 4.0 grade point average. In other words, she didn’t receive a grade lower than “A” during her entire college career. What’s TRULY amazing about the story is that due to having spinal muscular atrophy, she’s unable to move any muscles except the ones in her face, and one finger.

Here’s an excerpt:

The Columbia [MD] resident was born with spinal muscular atrophy, type II, a form of muscular dystrophy.

She can only move the index finger on her right hand.

She has feeling in her entire body, but she can’t control any other muscles other than those in her face.

But when her mother, Pushpa Krishnaswamy, or a friend places her hand on her red track ball, she’s transformed.

“That got me through college and high school and that’s the reason for my 4.0,” said Krishnaswamy, who graduated in 2001 from Wild Lake High School, in Columbia, and from UMBC five years later.

She said her computer’s virtual keyboard allows her to roll the pointer over a letter and click the mouse to type.

The time-consuming process meant Krishnaswamy, a Meyerhoff scholarship recipient, worked many nights late into the morning.

Pushpa Krishnaswamy said her daughter often didn’t go to bed until 4 or 5 a.m. after spending the night and early morning typing her school work.

You can read the entire story on the Catonsville Times website.

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