2009 National Conference
Exploring New Frontiers through Research

 June 12-13, 2009
 St. Louis, MO

   Contributed by Thurza Campbell
   Sponsor and Breakout summaries contributed by Beth Anne Shultz

The 7th annual National Conference of SPF opened Friday night in St. Louis. It was immediately apparent as participants mingled that Chairperson Tina Croghan had the many helping hands of her students assisting. Students’ posters decorated the meeting room. The SPF quilt was on display for the enjoyment of all. Lewis and Clark, dressed in military uniforms were part of the welcoming party.

The featured speaker after dinner was author and columnist with an expertise in accessible travel, Candy Harrington. She outlined the worldwide progress in legislation requiring airlines to transport passengers in wheelchairs. She predicted that as the Baby Boomers age, and demand accessibility improvements in both transportation and lodging, that laws will be further refined.

To indicate the range of accessible tourist options, she discussed five 'Wow' possibilities:

1. River rafting on both calm water and white water.
2. Exploring a huge Swiss Family Robinson type tree house www.treehouse.org has built tree houses so far in 37 states.
3. On Lake Powell, above the Glen Canyon Dam, you can rent an accessible house boat. It’s even got an elevator. http://www.globalaccessnews.com/lakepowell07.htm
4. Eureka makes a wheelchair accessible tent. It can be set up when seated in a wheelchair. The door is large enough to enter through the door in your wheelchair. http://www.eurekatent.com/p-69-eureka-freedom-tent.aspx 
5. If you’re really adventuresome, try wheelchair bungee jumping. It is to be offered at the 2010 Paralympics in Whistler, BC, north of Vancouver.

Candy concluded her talk by giving the audience several noteworthy travel tips:

• For your first trip, go someplace close to home. Plan a simple trip.
• Ask for the details of what is the accessible room, e.g. does the room have a roll-in shower? For a 10 tips on finding an accessible room, please read Candy’s article in the Living section.
• Hope for the best but be prepared for challenges.
• Have a “can do”, positive attitude.
• Know the law. You can’t complain about what’s wrong if you don’t know what’s right.

“Gene Silencing Therapy for Motor Neuron Disease”
In a pre-recorded interview, Dr. Robert H. Brown, Jr., the chair of the Neurology Department at University of Massachusetts Medical School, explained the process of gene silencing – interrupting the process of creating of specific proteins that are known to be toxic to the motor neurons. The technology, discovered only about 10 years ago, has never been applied to humans.

Dr. Brown’s team recently applied for FDA approval to perform a “human trial” injecting a gene silencing drug into an individual with an aggressive, hereditary form of ALS. If successful the gene silencing therapy would be the first treatment to arrest ALS development – an exciting breakthrough! Dr. Brown noted that specific toxic proteins have been isolated in patients with both hereditary and sporadic forms of Parkinson’s and Alzheimer’s. Therefore, he believes that the gene silencing therapy to turn off the creation of toxic proteins will some day be useful for all motor neuron diseases including HSP and PLS. Dr. Brown concluded the interview by thanking the SP Foundation for it’s contribution of $25,000 to cover most of the costs associated with the surgery.

Dr. John Fink spoke about research advances in understanding both HSP and PLS. Treatment is his ultimate goal. Doctors can do some therapy before they know the complete biochemistry of the cause or causes of each disease. Eventually each disease must be defined. The PLS ‘04 Symposium was a gathering of experts from around the world to determine whether PLS is a separate disease. There appear to be five forms of PLS. There are now known to be 40 genetic types of HSP. Even though very diverse presentations of both HSP and PLS are apparent, he and other researchers are trying to find common pathways, since bottom line the nerves involved are the same. A study is in process on 10 PLS people with a fig4 gene mutation now. Go to Pub Med for a complete description of recent HSP research highlights. There are many findings relating to many of the 40 genetic mutations. Complete genetic testing costs $13K. It is very beneficial however, as it can definitively determine which gene or genes have mutated.

After the genetic portion of his talk, Dr. Fink explained what both embryonic and adult stem cells are, how they can be obtained and the potential of what these undifferentiated cells can eventually do. Currently five phase one clinical trials are under way for various neurological conditions in the US and Great Britain. There are concerns at this time that injections of embryonic derived stem cells might lead to tumors developing, evolving from the donor’s genetic material. Dr. Fink is beginning skin biopsy of both PLS and HSP patients here at the Convention to advance his research.

After lunch the first speaker was Madonna Long, cofounder and editor of Chloe magazine, for women with disabilities. www.chloemagazine.com 24.4% of women in US are either physically or mentally handicapped. She discovered that no one had been marketing to this segment of the population. Thanks to her efforts, she has gotten designers to design fashionable wheelchair clothes (http://www.agapparel.com/ and http://www.legawear.com/). She puts on fashion shows at Ability Expos. She’s an energetic spokesperson for how all handicapped can advocate for the handicapped community. For example, she says, “Become an advocate yourself for yourself with your Congressman. Tell your story to them. Take advantage of any opportunity to explain why any upcoming issue is important to you.”

The President's Call to Service Award was presented by Jim Sheorn to a very surprised and deserving Annette Lockwood. She was eligible to be nominated for this award since she’d given at least 4000 hours of volunteer service for a non-profit. We know that 4000 hours amount to a fraction of her hours devoted to SPF.

Dr. David Anderson discussed the latest advances in intrathecal Baclofen pumps. Reducing muscle tone is the goal of this therapy. An extensive pre-implantation series of tests is required prior to surgery. After surgery the dosage is controlled by a small hand held device. Therapy is advised to help the patient adapt to less spasticity. More study is needed regarding the effectiveness of the pump with HSP. Despite potential problems, most people are pleased with the results.

Panel discussion: Therapies - Craig Gentner moderated question and answers with the audience about Botox therapy for spasticity, chiropractic and acupuncture. Dr.Lizette Alvarez, a physiatrist has extensive experience with injections of Botox into muscles for temporary spasticity reduction. Rand Olson, D.C. is both a chiropractor and acupuncturist. Both are striving to assist patients to optimize all aspects of health. Those five components are: spiritual, structural, emotional, nutritional, and energetic.

The afternoon’s agenda concluded with four information-packed Break-Out sessions.

Break-out Summaries

Reaching the Media for SPF - Mark Dvorak
Orthosis Designs – Keith Smith
HR 804 – Larry Asbury
Planning a TeamWalk - Kathi Geisler and Jim Campbell

 Read about our Sponsors/Vendors

Thanks!

This information packed event was enjoyed by 130 people. Of those, 66 were first-timers. People enjoyed the programs which were planned under the direction of Jim Sheorn, Chair. If you missed this one, plan now to join us next year. You’re bound to make new friends and be inspired.

A special note of thanks goes out to our sponsors and to those who generously gave their time and money throughout the 2009 conference. Tim and Tina Croghan deserve recognition and appreciation for implementing, monitoring, and concluding this year’s event. Together with their Fort Zumwalt West High students, both past and present, participants were met with informed and friendly “staffers”! These young people and future leaders, were a pleasure to meet and could always be counted on to answer questions and concerns about the conference. They were also a great source of information when it came to recreational activities throughout the St. Louis area. Tim, Eric and David were the individuals who video-taped the conference and had to rush the final edits out to various people within the SP organization, ASAP. This alone was a tremendous job. Thanks again to Tina, Tim, and their crew for spending so much of their leisure time ensuring a successful and fun-filled conference.