Advocacy
You can become an advocate for yourself and others in many ways: advocate for research, address the needs of a specific population affected by Alzheimer’s and/or Parkinson disease, empower those dealing with a recent diagnosis, help legislate change, donate to causes that matter to you and STAY INFORMED. However you tackle it, be the change!
Current Legislation
In a 2014 online article for The Hill, Former U.S. Surgeon General and former CDC Director Dr. David Satcher writes: “Alzheimer’s is the most under-recognized threat to public health in the 21st century.” The goal of The Alzheimer’s Impact Movement (AIM) is to develop and advance policies that would increase investment in research, care and support for Alzheimer’s disease.
Visit their website to learn more about how you can take action:
https://alzimpact.org/take_action/act_now
Responding to the rising number of caregivers in the United States, Congress passed The Recognize, Assist, Include, Support and Engage (RAISE) Family Caregivers Act in January, 2018. Under this legislature, the U.S. Department of Health and Human Services will develop strategies to support caregivers and improve coordination across government programs that support caregivers and care recipients. Click the first link to read the law and the second for a breakdown of all it covers.
Read the law:
https://www.congress.gov/bill/115th-congress/house-bill/3759/text
Understand the detailed breakdown:
https://www.aarp.org/politics-society/advocacy/caregiving-advocacy/info-2015/raise-family-caregivers-act.html
Bipartisan support in the U.S. Congress and presidential leadership resulted in a $350 million increase for Alzheimer’s and dementia research funding at the National Institutes of Health (NIH). Signed into law by President Trump, the new 2020 Alzheimer's research budget for the United States now stands at roughly triple the amount at which it began when President Trump stepped into office.
http://www.alzheimersweekly.com/2019/12/record-breaking-alzheimers-bipartisan.html
“Advocacy is not a quick thing… you have to be in it for the long haul,” says Parkinson’s advocate Jerry Boster. Read about the Parkinson’s Policy Forum that saw over 150 Parkinson’s advocates convene in Washington, D.C. and the policies that came out of it.
https://www.michaeljfox.org/news/2019-parkinsons-policy-forum-drives-change-access-care-issues
Advocacy
From act.alz.org: “Ambassadors are grassroots volunteers who serve as the main point of in-district contact for a targeted member of Congress to help the Alzheimer’s Association achieve its federal policy priorities. They develop and cultivate trusted relationships with their assigned congressional office through ongoing, personal contacts, drawing upon proven techniques and the support of Association National and Chapter staff.”
Learn more:
https://act.alz.org/site/SPageServer/?pagename=advocacy_action&scid=1759
Become an Alzheimer’s Advocate in North Carolina:
http://act.alz.org/site/Survey?ACTION_REQUIRED=URI_ACTION_USER_REQUESTS&SURVEY_ID=6025
Already an advocate?
Contact us to let us know your experience.
From Parkinson.org: “We can make research more efficient and effective by ensuring that people with Parkinson's and care partners are primary partners in research alongside scientists, industry and government… Parkinson's Advocates in Research (PAIR), makes this partnership a reality by bringing together the people who live with Parkinson's and the people developing new treatments.”
Become a Research Advocate:
https://www.parkinson.org/research/Patient-Engagement/Advocate-for-Research
Already an advocate?
Contact us to let us know your experience.
- North Carolina: https://www.ncleg.gov/About/ContactInfo
- South Carolina: https://www.scstatehouse.gov/
- Find your state: https://www.congress.gov/state-legislature-websites
Already an advocate?
Contact us to let us know your experience.