Fighting Back Episode 8 [12:00m]: Download

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.

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.

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.

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.

A truly amazing and inspirational story 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.

Reporter Jacob Ganz interviewed Washington and Baltimore indie-rocker and producer J. Robbins this week, about his son’s battle with spinal muscular atrophy.  Callum Robbins, who is nearly 18 months old, has spinal muscular atrophy type 1.  The music community in DC and around the country has rallied around the Robbins family, donating charity concerts and other forms of support.

More on the story is available on the NPR website, including an audio link to listen to the story. 

 Fighting Back Episode 7 [08:30m]: Download

There are a number of ways to fight a serious or incurable disease. Kelly Harmsen found a rather creative and very effective technique. Her son has amblyopia, or lazy eye, a disorder that requires him to wear an eye patch for several hours every day. If his condition is not treated properly, he could lose the sight in the affected eye. The problem is, for a time he refused to wear the patch. Kelly turned to the multimedia world for a solution, creating a puppet show on DVD that would not only entertain her son but also teach him why it’s important to wear his patch.

In episode 7 of Fighting Back, a podcast produced by Fight SMA and FighterMom that tells inspirational stories about people and families fighting serious diseases, we talk to Kelly and hear how she came to create her company, Bjort & Company, Inc., and DVD, The Eye Patch Kids.

More information on Amblyopia is available from Prevent Blindness America.

To hear Episode 7 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.

Make-a-wish Foundation is making the wish of a Nevada girl with SMA come true. The Reno Gazette-Journal recently published a story about seven-year-old Satori Lewis and her wish to have a playhouse big enough that she could drive her electric wheelchair inside and move around.  With the help of 20 businesses in her Dayton, NV hometown, that wish will be fulfilled this week.

Here’s an excerpt from the story:

Satori said she is excited for the playhouse to arrive and has a special spot under a large cottonwood tree selected in her family’s backyard.

The area will have a secret backyard garden and a special ambience with a steel dragon that her grandmother gave her to guard over the very special play place.

She said she plans to invite some of her friends over for a house-warming party after the playhouse is set up. Satori decided on a beading party for the first entertaining she will do in her new playhouse.

She said she chose white for the inside walls to display her artwork.

“Of course there will be a book shelf and drafting table and maybe curtains,” Satori said.

You can read the entire story at the Gazette-Journal website.

Families of SMA announced recently the selection of a clinical candidate for spinal muscular atrophy through its program being conducted at deCODE chemistry.  The lead compounds have shown the ability to extend survival in a mouse model of SMA.

For more information on this announcement, you can read the news release from FSMA.