Back

The PAN Forum

Nan Abraham and Brenda Tucker

Keeping informed as to what is going on in the Parkinson’s community is important to all of us. There is no better way to facilitate this than by attending the annual PAN forums. The 11th annual Parkinson’s Action Network Forum had a record breaking attendance of more than 350 attendees from all over the United States. The 3 day Forum started on Sunday February 6th and the general theme was "How Science Can Find A Cure." This year’s forum was promoted via web cast to provide broader communication and participation. The 3 days of the forum were extremely aggressive. So much is covered that it would be impossible to share all of it with you but we will highlight some of the events that were highly impressive.

First, we would like to commend the PAN Committee for coming up with an extremely informative agenda and some really tremendous speakers. The keynote speaker was Dr. Elias Zerhouni, Director of the National Institutes of Health. He gave us an overview of Parkinson’s disease research, the funding of federal programs, and shared projected therapies for Parkinson’s disease patients.

There were some very informative presentations given by the Department of Defense on the topic of the Nuerotoxin Exposure Treatment Research Program. ( NETRP) This research was initiated due to the fact that soldiers may be at risk of developing neurodegenerative diseases due to their exposure to stress, toxic chemicals and radiation. Parkinson’s Disease is a central focus of this research program because it can be caused by environmental exposure. So part of our mission was to request an increase to assure appropriate funding of this program in 2006.

We were very pleased to see that there is more concentration being directed toward learning about cognitive and non-motor symptoms of Parkinson’s Disease. These symptoms can be as debilitating as the physical symptoms caused by Parkinson’s.

On Monday, the group broke out for training purposes. We learned about the legislative issues and how to approach our representatives to educate and gain commitment and support for our causes.

Early on Tuesday, we set out for Capitol Hill. The sun was just beginning to come out from behind the clouds and the air was crisp. The buses were filled with excited teams’ ready to employ their strategy and ready to get their word heard! The teams met with their Senators and representative and discussed funding for Parkinson’s disease, stem cell research, as well as other community issues.

Tuesday evening, we had the pleasure of attending the Louis Fishman Awards Dinner. We were informed that our visits were well received with positive results. That cast a very positive cloud over the room. It was also time to give recognition to some very deserving individuals. Linda Herman was the recipient of the Louis Fishman Award. Linda is a very ambitious advocate. She is a Technical Services Librarian and an Associate professor at Medaille College Library in Buffalo, New York. In addition, she is Co-editor and writer for the Grassroots Connection website and researcher for the Parkinson’s Pipeline Project and is on the steering committee for New Yorkers for the Advancement of Medical Research.

Len Casavant better known as "Chy" was this year’s recipient of the Murray Charters Award. Chy is the state Co-Coordinator for South Carolina. He wanted to make a difference in the Parkinson’s Community so he set his sights and started a live Internet radio program called "Travels With Parkinson’s" The radio show opened communications with Parkinson’s patients and gave them an opportunity to gain knowledge and advice about the disease.

We are pleased to know both of the recipients of this year’s award. Please join us in congratulating them for their perseverance and their efforts.

On Wednesday morning, we attended a half day session which included training in presentation skills. This was both enjoyable and helpful.While there, we discussed the GDNF clinical study. For those of you that don’t know, over the past 4 years, 48 patients with PD participated in trials involving GDNF (a nuerotrophic growth factor) conducted but the Amgen Corporation. Last August Amgen decided to stop treatment because of safety and health concerns. The stopping of this trial has had a very negative impact on the quality of life of these patients. Many have voiced their desire to continue taking GDNF because of the positive effects that have experienced. The FDA has said that it would not stop Amgen from allowing these patients to continue the drug and numerous patients have stated they will take the responsibility for any risks that may be caused by GDNF. Commonly, research clinical trials involve potential risks to the patients that are participating in them. It is their willingness to take risks that drives researchers into finding the cure for many diseases. We our happy to say that many of us that were there took the opportunity to sign a letter for Amgen requesting that they support the patient’s wishes. * (see below)

The 11th Annual PAN Forum was definitely a very memorable time. We got together with many wonderful and dear old friends. We met some great new friends filled with energy and ready to jump in and participate. This made our participation very exciting. In conclusion, we hope we have shown you how valuable it is to continue learning, participating and becoming our own advocates. Each of us can do it in our own way. Stay informed, get involved and make change happen!

Together WE Make a Difference!

With much Love and Hope,

Nan & Bren

 

For information about GDNF and Amgen please go to: http://www.pdpipeline.org

http://www.grassrootsconnection.com

http://www.gdnf4parkinsons.org