“Monumental Hopes & Dreams for a Cure”

The 2012 Annual Conference was held in McLean, VA on June 8-9, 2012. On Sunday, June 10th, we held a TeamWalk on the National Mall in Washington, DC. Below is a summary plus videos of our main speakers.

Over 120 people attended our reception and dinner on Friday night. In addition to attendees from 26 states, Washington, DC and Canada, we were honored to have Peter Macpherson from Australia, Raj Tadla from India, Chris and Sandi Holt from New Zealand plus Mo and Lorraine Charge from the UK. During the reception the guests could take advantage of a Photofun Station to take their picture. The photos can be seen at Photofun at the Annual Conference.

Dr. Nazem Atassi spoke to the group about Therapy Development, Stem Cell Research, the Northeast ALS (NEALS) Collaboration and the SPF/NEALS Collaboration. Dr. Atassi emphasized the importance of Biomarkers and how they can improve clinical care and accelerate therapy development. Biomarker research will help with understanding the disease, identifying and testing treatment targets. He also spoke about the stem cell ALS clinical trial at Emory University in Atlanta, GA. The goal of this clinical trial is to see if stem cell therapy is safe. There are several challenges of stem cell treatments such as determining the correct placement of injection, best method of delivery and type of stem cells to use. NEALS facilitates trials in ALS and other motor neuron disorders. The number of subjects in these trials increased tenfold from approximately 200 in 2008 to over 2,000 in 2011. Please check the new NEALS website for current trial and NEALS clinic information. The NEALS and SPF collaboration began in 2010 and is led by Drs. Atassi and Jinsy Andrews. The goals of this collaboration are:

• Improve HSP/PLS clinical care
• Connect HSP/PLS patients with experienced NEALS clinicians
• Use NEALS infrastructure to plan and conduct HSP/PLS clinical trials
• Encourage NEALS members to submit proposals for a SPF Research Grant

Frank Davis opened the conference on Saturday morning to a crowd of 156. The main speakers who were videotaped are:

• Craig Blackstone, MD, PhD – NIH/NINDS
• Corey Braastad, PhD – Athena Diagnostics
• Tony Chiodo, MD – University of MI
• John Fink, MD – University of Michigan
• Mary Kay Floeter, MD, PhD – NIH/NINDS
• Hiroshi Mitsumoto, MD – Columbia University

Please send any comments regarding the videos to jmsheorn@comcast.net.

In the afternoon, three accessible vehicles were on site for the attendees to compare. Moore Cadillac brought a MV-1, Freedom Motors demonstrated a wheelchair van conversion and their converted Honda Element (owned by Annette Lockwood). In addition to the above demonstration, there were three breakout sessions in the afternoon. The topics were Pediatric Physical Therapy, Adaptive Sports and Caregiving. Please see the article submitted by Jim Brewi about his purchase of a tricycle after attending the Adaptive Sports session. Thanks to everyone who helped make this Annual Conference success including the attendees, speakers, sponsors and exhibitors.

TeamWalk – Washington, DC

The TeamWalk held on the National Mall after our Annual Conference was a CAPITAL success!! Over fifty courageous souls braved a Washington, DC heat wave, and the accompanying high humidity, to walk ‘The Walk’! It took two buses to get us all down to the Smithsonian Metro Stop. After a photo op, courtesy of Gary Lockwood, we began the journey towards the Lincoln Memorial. Many of us stopped along the way to enjoy the Washington Monument, the World War II Memorial, the Vietnam Wall and the Korean War Veterans Memorial. Our last bus run was at 3:20 in the afternoon so a few of our walkers were able to squeeze in a Museum or two after reaching the Lincoln Memorial. Thanks to everyone who participated! We had a great time plus we raised $14,500!

Update in PLS Research

Mary Kay Floeter, MD, NIH/NINDS Bethesda, MD

HSP Studies

Craig Blackstone, MD, PhD NIH/NINDS Bethesda, MD

Spasticity Management

Tony Chiodo, MD, University of MI, Dept. of Physical Medicine & Rehabilitation Ann Arbor, MI

Update on Multicenter PLS Research

Hiroshi Mitsumoto, MD, Columbia University New York, NY

Basic Genetics and Genetic Testing

Corey Braastad, PhD, Athena Diagnostics Worcester, MA

Research Advances in HSP and PLS

John K. Fink, M.D., University of MI Dept. of Neurology and SPF Medical Advisor