250 Days To Mt. Kilimanjaro – Parkinson’s Action Network

About the Parkinson’s Action Network:

We are the unified voice of the Parkinson’s community advocating for better treatments and a cure.  In partnership with other Parkinson’s organizations and our powerful grassroots network, we educate the public and government leaders on better policies for research and an improved quality of life for people living with Parkinson’s.  To learn more about The Parkinson’s Action Network and to voice your opinion to your elected officials to continue important work started by PAN click here.

How It All Started:

In 1991, Joan Samuelson founded the Parkinson’s Action Network (PAN) when she realized that Parkinson’s disease was not receiving enough funding or attention from the Federal government.  Joan immediately put her hard work and creativity into building a Parkinson’s organization to educate those with Parkinson’s how to advocate for themselves.

Diagnosed with Parkinson’s in 1987, Joan left the practice of law to found PAN four years after her diagnosis.  Upon starting the organization, she used her spirit and drive to fight for more attention for Parkinson’s disease.  This determination and dedication inspired many more around the country to become advocates and successfully fight for their cause.

Joan immediately took her fight to Capitol Hill where she walked the halls of Congress, knocking on doors to be heard.  With each meeting, her voice grew a little louder and PAN began to grow.  What started as an organization of one person has now become a strong, nationwide advocacy group and the unified voice of the Parkinson’s disease community.  Joan’s dedication has helped take Parkinson’s disease from limited visibility to the national consciousness.  Thanks to Joan’s work, serving as PAN President until 2006 and Board Member until 2008, millions of Americans today understand more about Parkinson’s disease and are involved in the fight for a cure.

PAN Advocates’ Hard Work Garners Significant Victories:

Creating the National Neurological Diseases Surveillance System Act:

The National MS and Parkinson’s Disease Registries Act, H.R.1362/S. 1273, was introduced in the House and Senate in 2009.

In September 2010, the bill was expanded to become the National Neurological Diseases Surveillance System Act as recommended by the Centers for Disease Control and Prevention (CDC), but maintaining Parkinson’s disease and Multiple Sclerosis as priorities in the newly expanded legislation.

On September 28, 2010, the House of Representatives passed H.R. 1362 by voice vote, a significant victory for the Parkinson’s community.

PAN advocates worked to secure 206 Representatives and 28 Senators as co-sponsors.

Senate passage is needed to pass this bill which, if enacted, will give our community, for the first time, data on the incidence and prevalence of this progressive, neurodegenerative disease.
By clicking the link above to the PAN website you can easily write to your states leaders in support of PAN and the work they are doing to end Parkinson’s disease.< These are some of the progressive initiatives set forth by PAN:

  • Developing New Drugs and Therapies Faster
  • Supporting Vietnam Veterans with Parkinson’s Disease
  • Ensuring Access to Social Security Disability Benefits
  • Ending Restrictions on Federal Funding for Human Embryonic Stem Cell Research
  • Preserving the Department of Defense (DoD) Parkinson’s Research Program
  • Securing Funding for Research and Drug Review

In 2011 there will be a PAN Conference held in Washington DC. It is an opportunity for those like us to learn more about using our voice to become effective advocates for funding for improved treatments, increased research and an end to Parkinson’s disease. I hope to attend the conference to take my involvement to the next level. pkp
PAN Conference
Save the Date

Parkinson’s Action Network
Research & Public Policy Forum
February 28-March 2, 2011

Live Webcast
February 28, 2011, 1:00-4:00pm ET

Omni Shoreham Hotel
Washington, DC

The PAN Forum is the link between Parkinson’s advocates and federal government, bringing them together to secure research funding and better policies to support our community. Working together, both Webcast and Washington, DC participants will increase awareness of Parkinson’s and learn ways to advocate for better treatments and a cure. These skills will be used year-round by all participants, adding to the united voice of the Parkinson’s community.

With two ways to participate, you can choose what works best for you!

Forum Webcast
Monday, February 28, 2011
1:00 pm – 4:00 pm ET

Participating in the Forum Webcast is free and easy!  All you need is a computer with a high-speed Internet connection!  The live Webcast provides the opportunity to learn about PAN and how to advocate for Parkinson’s disease year-round.

Washington, DC Event Information

Monday, February 28, 2011 through Wednesday, March 2, 2011

Washington, DC Forum participants will come together for two days of training and education followed by a day meeting with Members of Congress on Capitol Hill. Participants will gain valuable education and information to bring back to their local communities for use throughout the year. The training and educational panels include:

New Congress panel – speakers will give Forum participants an update on the new Congress and how this dynamic will affect public policy for Parkinson’s disease and the search for a cure for years to come.

A Conversation with Researchers – featuring people living with Parkinson’s and federally funded researchers. Conversation will focus on public policy for Parkinson’s and how it leads to the therapies and cures of tomorrow.

Special breakout sessions and educational sessions will feature expert speakers and advocacy training.

Sessions will also give participants valuable advocacy training and educational information to help during meetings with Members of Congress and staff on Capitol Hill, and with advocacy efforts back at home.

On the final day of the Forum, Wednesday, March 2, participants will Call on Congress, representing advocates from their community, by meeting with their Members of Congress. Along with Webcast participants and thousands of Parkinson’s advocates, the voice of the Parkinson’s community will be heard in Washington.

The registration fee for the Washington, DC event is $200 per person. The Forum will be held at the Omni Shoreham Hotel. To reserve your room, please visit http://www.omnihotels.com/FindAHotel/WashingtonDCShoreham/MeetingFacilities/ParkinsonsActionNetwork2.aspx

PAN offers scholarships to ease the financial burden of attending the Forum for those who may need assistance.


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