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Pan Advocacy Presentation

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  • 1.
    • www.parkinsonsaction.org
    1025 Vermont Ave, NW Suite 1120 Washington, DC 20005 Phone: (800) 850-4726 Phone: (202) 638-4101 Fax: 202-638-7257 Email: info@parkinsonsaction.org
  • 2. Who is PAN?
    • PAN is the advocacy voice on public policy issues throughout the country, unified behind the ultimate goal of finding a cure for Parkinson’s disease.
    • PAN represents the entire Parkinson’s disease community, including the Fox Foundation, NPF, PDF, Parkinson’s Unity Walk, and APDA.
  • 3. History of PAN
    • After being diagnosed with Parkinson’s disease, Joan was frustrated to discover the impact of government on her life and the lack of attention being paid to Parkinson’s.
    • PAN was founded in 1991 by Joan Samuelson.
  • 4. Where are we Now?
    • PAN works on the grassroots level and with lawmakers directly on issues affecting the Parkinson’s community, including:
    • NIH funding
    • DoD funding
    • Medicare and Social Security
    • Veterans Affairs programs
    • Food and Drug Administration
    • Stem Cell Research
  • 5. Why Does Congress Listen?
    • PAN’s impact is bolstered by every grassroots advocate who makes his/her voice heard.
    • Lawmakers want to hear from you, their constituents, about the needs of the Parkinson’s community.
  • 6. Sampling of PAN’s Success
    • PAN generated $275 million for Parkinson’s research through DoD’s Neurotoxin Exposure Treatment Parkinson’s Research (NETPR) program.
    • PAN saved the VA’s Parkinson’s Disease Research, Education, and Clinical Care Centers (PADRECC) from closing. PADRECCs provide clinical care and outreach to the nearly 80,000 veterans with Parkinson’s disease.
    • PAN worked to create a law preventing discrimination based on genetic information.
  • 7. Current Successes:
    • In March 2009, President Barack Obama signed an Executive Order removing the restrictions on federal funding of embryonic stem cell research.
    • PAN advocates are deeply involved in commenting on NIH guidelines regarding the future conduct of this promising research.
  • 8. Current Successes:
    • Parkinson’s advocates helped secure $10 billion in additional funding for NIH in the 2009 economic stimulus bill.
    • Sen. Arlen Specter, Senate Co-Chair of the Bicameral Congressional Caucus on Parkinson’s Disease worked to save this essential funding as other projects and programs were cut.
  • 9. Current Successes:
    • In 2008, the House and Senate voted to provide $25 million in NETPR funding.
    • President Bush signed the bill into law, giving the program a $5 million increase over FY2007 funding.
    • Research funded by NETPR aims to identify early signs of Parkinson’s disease, potentially leading to better treatments.
  • 10. Current Successes:
    • Secured $150 million in additional funding for both NIH and FDA in the FY 2008 Emergency Supplemental Bill.
    • In a Continuing Resolution funding government agencies through March 2009, Congress allotted FDA an addition $150 million.
  • 11. Current Issues:
    • Support at least $55 million in funding for the Department of Defense NETPR program.
    • Funding must be secured annually for this program – the only Parkinson’s disease-specific program funded by the Federal government.
  • 12. Current Issues:
    • Support the creation of a national Parkinson’s disease registry, with the National MS and Parkinson’s Disease Registries Act, HR 1362.
    • This bill creates separate registries for Parkinson’s and MS.
    • More concrete numbers will give better indication to how many Americans have Parkinson’s disease and where they live.
  • 13. Current Issues:
    • Support reforms of Social Security to ensure that people with Parkinson’s disease are treated fairly.
    • Speed up the time in which Social Security claims are processed.
    • Work with Social Security to give doctors and patients better documentation when dealing with such government programs.
  • 14. How Does PAN Work?
    • PAN works through informed constituents asking lawmakers to address the needs of the Parkinson’s community.  
    • You can join PAN today by signing up for Action Alerts and asking others to sign up.
  • 15. Volunteer Leadership
    • State and Congressional Coordinators are PAN advocacy leaders who represent the Parkinson’s community and advocate the PAN Policy Agenda with members of Congress.
    • Volunteer leaders develop a grassroots network locally to disseminate information and motivate advocates to action.
  • 16. PAN in _______
    • State and Congressional Coordinators entered here
    • What’s going on in the state?
  • 17. Congressional Leadership in ___________ INSERT STATE PAGE GRAPHIC
  • 18. Parkinson’s Disease Research in _________
  • 19. Join Us!
    • Together we can win the fight against Parkinson’s disease, but we need help--from care partners, family, friends, and health professionals, as well as people with Parkinson’s.
  • 20. 1,000,000 to 1,500,000
    • There are between 1 million and 1.5 million people with Parkinson’s disease in the United States.
    • Imagine if only 10% of them used Action Alerts to contact Congress.
    • 100,000 voices could not be ignored!
  • 21. www.parkinsonsaction.org 1025 Vermont Ave, NW Suite 1120 Washington, DC 20005 Phone: (800) 850-4726 Phone: (202) 638-4101 Fax: 202-638-7257 Email: info@parkinsonsaction.org