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A Chapter of the National Parkinson Foundation
Serving the Central and Northern
Florida areas
Parkinson Disease Organizations Join Efforts to Provide Hurricane Katrina Relief
The Southeast Parkinson Disease Association (SEPDA), a chapter
of the National Parkinson Foundation, and Movers & Shakers, a national advocacy and support group for Parkinson Disease
(PD) patients, have joined together to provide and coordinate relief and support to PD patients and their families displaced
or affected by Hurricane Katrina. Both organizations are comprised of and led by people with PD. Gretchen Garie, President
of Movers & Shakers, coordinates the volunteer efforts in the affected states. Steve Hochberger, President of SEPDA, coordinates
the relief fund and acquisition of medications, durable medical equipment and other needed supplies. This relief effort has
been embraced by other PD organizations such as National Parkinson Foundation, Parkinson Disease Foundation, Young Onset Parkinsons
Association, Parkinson Pipeline Project and many others, including the many online PD communities. PD patients and families
who would benefit from this program can apply for aid and assistance through these organizations' websites (www.sepda.org and www.pdavocates.org). Help us to help those in need.
Steve Hochberger
Gretchen Garie
SEPDA
Movers & Shakers
(407)489-4124
(239)304-2241
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Chapter Affiliation with NPF is Approved by the Board of Directors
On 16 March 2005, the Board of Directors approved the application of SEPDA to become the 38th Chapter of the National Parkinson
Foundation (NPF). This is the largest number of Chapters that NPF has ever had in their 49 year history. 'Fight back, move
forward' is the latest slogan of the NPF and SEPDA wlll be a key partner in the fight against Parkinon Disease. We look forward
to a long, productive relationship with NPF and are looking forward to being part of the team.
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Parkinson's Community Launches Advancing Parkinson's Therapy Campaign
Advancing Parkinson's Therapies (APT) is a new community-wide initiative of the major Parkinson's patient voluntary groups
that has been created to accelerate the development of new treatments for Parkinson's by increasing awareness and participation
in clinical trials among the Parkinson's community.
The concept grew out of the concern about the disparity between the number of new therapies that will soon be moving into
clinical trials and the number of Parkinson's patients who are currently volunteering. It is estimated that 5,000 people with
Parkinson's are participating in clinical research; far short of the 10,000 to 15,000 individuals researchers anticipate they
will need to efficiently conduct clinical studies over the next two to three years. This disparity could result in severe
delays in the availability of new treatments that could offer relief for the nearly one million Americans who suffer from
Parkinson's.
Central to this initiative is a national public awareness campaign that has at its core a new website, www.PDtrials.org,
which is dedicated to providing easy to understand, up-to-date, centralized information on those Parkinson's disease clinical
trials that are open for enrollment. Key features of the website include:
* Providing a one-stop gateway for people with Parkinson's, caregivers, and the medical community to access information
about Parkinson's clinical research;
* Helping potential participants identify trials that are open by type and by geographic location;
* The option to receive free email updates when new trials are added;
* The ability to order free print materials, such as a patient education brochure: "Parkinson's Clinical Research:
A guide to understanding how you can play a part in moving Parkinson's research forward" online or through the APT information
request line at (888) 823-8889.
Advancing Parkinson's Therapies (APT) is led by the Parkinson's Disease Foundation in collaboration with American Parkinson
Disease Association, the Michael J. Fox Foundation for Parkinson's Research, the National Parkinson Foundation, the Parkinson's
Action Network, the Parkinson Alliance, and WE MOVE. And, is advised by National Institute of Neurological Disorders and Stroke,
the Parkinson's Study Group, and the Parkinson's Pipeline Project.
For further information, visit www.PDtrials.org, contact the APT information request line at (888) 823-8889, or send an
email to info@PDtrials.org.
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The Southeast Parkinson Disease Association (SEPDA) joins the World Parkinson Congress as an Organizational Partner
The World Parkinson Congress today announced its current list of financial supporters and Organizational Partners for the
World Parkinson Congress, scheduled February 22-26, 2006, in Washington, D.C.
The World Parkinson Congress, Inc. is a nonprofit organization dedicated to providing an international forum showcasing the
best scientific discoveries, medical practices and caregiver initiatives related to Parkinson's disease. Physicians, scientists,
allied health professionals, care givers and people living with Parkinson's will come together to learn about the disease
and work to find a way to expedite a cure.
The Southeast Parkinson Disease Association is one of more than 30 Organizational Partners (OP) from eleven countries. The
list of growing OPs includes nonprofit organizations and professional associations working directly or indirectly with Parkinson's
disease. Other organizations that have agreed to partner with the Congress are the: National Parkinson Foundation; American
Parkinson's Disease Association, Inc.; European Parkinson's Disease Association; Family Caregiver Alliance/National Center
on Caregiving; Parkinson';s Pipeline Project; Parkinson Society Canada; Take Charge! Cure Parkinson, Inc.; WE MOVE! and Parkinson's
Action Network.
The Congress also has created partnerships with several well-respected professional associations, such as the: American Academy
of Neurology; American Occupational Therapy Association; American Physical Therapy Association; Belgian Neurological Society
of Belgium; Israeli Neurological Association of Israel; Parkinsons Disease and Movement Disorder Society of India; Parkinson
Study Group; Société Française de Neurologie of France; and Turkish Neurological Society of Turkey.
"We are very excited to have developed these key partnerships with our friends and colleagues", said Dr. Stanley Fahn, Chairman
of the Congress. "This is the first Congress of its type; it offers valuable information to everyone working or living with
Parkinson's disease. The initial interest in the first World Parkinson Congress has been overwhelming and we anticipate that
more than 3,000 people from around the world will attend. These strategic and organizational partnerships are important to
the success of the Congress.
Present financial supporters for the Congress are the: Parkinson's Disease Foundation, The Michael J. Fox Foundation for Parkinson';s
Research, Northwest Parkinson's Foundation, Israeli Neurological Association, and the American Physical Therapy Association.
A pledge to offer financial support has been made by the National Parkinson Foundation.
The Congress will present four days of an intense program that will look more closely at cutting edge science, public policy,
best practices in care delivery and quality of life topics that all relate to Parkinson's disease. A call for abstracts will
go out in early 2005 and exhibitor space will be made available to all companies and organizations that wish to reach the
global Parkinson's community.
Parkinson's disease is a chronic, degenerative nerve disease that primarily affects movement, balance and muscle control.
The National Parkinson Foundation estimates nearly 1.5 million Americans live with Parkinson's. The disease usually develops
after age 65, although 15 percent of Parkinson's patients are diagnosed before turning 50 years old. The World Parkinson Congress
will work to bring the global PD community together to help build awareness about Parkinson's and to increase collaborative
efforts to find a cure.
To learn more about the World Parkinson Congress visit www.worldpdcongress.org. A full list of financial supporters and Organizational
Partners can be found at www.worldpdcongress.org/sponsors/partners.cfm.
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