Your Story ry, Your Turn Presented by: Jen Jennifer Sim Simpson, - - PowerPoint PPT Presentation
Your Story ry, Your Turn Presented by: Jen Jennifer Sim Simpson, , LM LMSW. Manager of of Advocacy an and Education, , HD HDSA Jaso Jason Gr Grom omley, , Esq Esq. . Vic Vice Pres esident, St Strategic He Health Car Care 1
Presented by: Jen Jennifer Sim Simpson, , LM LMSW. Manager of
and Education, , HD HDSA Jaso Jason Gr Grom
, Esq Esq. . Vic Vice Pres esident, St Strategic He Health Car Care 1
The following personal financial relationships with commercial interests relevant to this presentation existed during the past 12 months: Jason A. Gromley, Esq. Jennifer Simpson, LMSW
No relationships to disclose
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The information provided by speakers in workshops, forums, sharing/networking sessions and any other educational presentation made as part of the 2016 HDSA advocacy program is for informational use only. HDSA encourages all attendees to consult with their primary care provider, neurologist or other healthcare provider about any advice, exercise, medication, treatment, nutritional supplement or regimen that may have been mentioned as part of any presentation.
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– Educate your community? – Connect to HDSA’s ongoing work? – Infl fluence decision makers?
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Your story is who you are, where you’re from, and where you’re going.
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HD is a BIG part of your life, but many people are not as familiar with HD. Use your story to:
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#Le LetsT tsTalkAbou alkAboutHD tHD #Le LetsT tsTalkAbou alkAboutHD tHD
Advocacy = = St Storyt ytelli lling
le than statistics
unknown
their story Myths ab about HD D Advocacy
politicians
your story
to share your story as an advocate
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To be effective, you should:
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How do you use your story to
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WHY IM IMPORTANT?
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– Schools – Churches/Temples/Mosques – Community Centers – Police Stations
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Malia organized a jog-a- thon at her elementary school, and raised money and awareness for Huntington’s Disease.
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Jolene presented at the HDSA Iowa Chapter Education Day and the University of Iowa HDSA Center of Excellence’s screening of the film The Lion’s Mouth Opens about advocacy and how to get involved in Iowa.
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In addition to holding education days and events, Lauren educates local law enforcement about Huntington’s Disease.
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How do you use your story to
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WHY IM IMPORTANT?
space on their Chapter Boards for folks who want to get involved
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Morgan has facilitated the Barbara Lee’s Fast Track to a Cure for Huntington’s Disease car race for 8 years - raising funds and awareness for HD.
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Cheryl sold Amaryllises at her children’s school to raise money and support HDSA.
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How do you use your story to
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WHY IM IMPORTANT?
community relies on
information – they want to hear from you
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Local Government
Local Government
State Government
regulation of industry
State Government
regulation of industry
Federal Government
establish post office, issue patents, trade with foreign nations
Federal Government
establish post office, issue patents, trade with foreign nations
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Rais ise HD Awareness at the St State and Local l le level
Disease
Representatives and Senators
that you plan!
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Congress
114th Congress (Jan. 2015- Dec. 2016)
Congress
114th Congress (Jan. 2015- Dec. 2016)
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ting Members from 50 states
– Elected every 2 2 years – Controlled by Republicans (since January 2011) – 218 votes needed to pass a bill (Majority)
U.S .S. . House of f Representatives
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Senators from 50 states (2 each)
– Elected every 6 6 yea ears – Controlled by Republicans (since January 2015) – 60 votes usually needed to pass a bill
– No representation for the 5 U.S. Territories and Washington, D.C.
U.S .S. . Senate
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Republicans 53 Democrats 45 Independent 2
their outdated criteria for determining disability for individuals with HD, and
waiting period to ensure individuals with HD get the care they need, when they need it.
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The Huntington’s Disease Parity Act (S. 968/H.R. 842)
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The Huntington’s Disease Parity Act
House (H.R. 842) Senate (S. 968)
Sponsors: Representatives Kinzinger (R-IL) and Pascrell (D-NJ) Senators Gillibrand (D-NY) and Cassidy (R-LA) Number of States with at Least 1 Cosponsor: 45 15 Cosponsors: 253 Cosponsors
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Contact your Congressman and Senator
– I Care/Faces of HD Campaign
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Advocacy Tips
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For more in information on how you can help lp pass the HD Parit ity act ple lease vis isit it www.h .hdsa.org/takeaction
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Jennifer Simpson: jsimpson@hdsa.org Jason Gromley: jason.gromley@shcare.net
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