Advocacy & Getting Involved with HDSA/NYA Chelsea Rink, HDSA - - PowerPoint PPT Presentation

Advocacy & Getting Involved with HDSA/NYA

Chelsea Rink, HDSA MI Board Member Miranda Spencer, HDSA MI Board Member

What is Advocacy?

• Speaking up politically, educating, and raising awareness
• Engaging others affected by HD, building a nationwide movement and getting results!

Why Me? Why Now?

• You are the expert. You know more about HD than members of Congress and the general public,

and it’s up to YOU to educate!

• Congress needs to hear from YOU. Members of Congress are contacted about thousands of
• issues. It’s our responsibility as voters to tell them what is important to the HD Community
• Members of Congress won’t act unless they hear from US
• The general public won’t take notice unless we raise our voices together!

HDSA 2016 Advocacy Priorities:

“Improving access to care and benefits for individuals affected by Huntington’s disease at the national level” The current primary focus of the HDSA National Advocacy Effort is generating support in the U.S. Congress for the Huntington’s Disease Parity Act of 2015 (H.R. 842/S.968)

SSA Compassionate Allowance ~ We Did It!

• The Social Security Administration’s Compassionate Allowances (CAL) program fast-tracks disability decisions for

the most serious conditions.

• Juvenile Huntington’s disease (JHD) became one of the CAL conditions in August 2012.
• Adult Onset HD became a CAL condition in December 2012.
• Although the Compassionate Allowance designations for HD and JHD will make the disability review process easier, it

does nothing about the 24 month waiting period for Medicare. Nor does it fix SSA’s outdated guidelines for Huntington’ s disease.

This is why we still need to advocate for the Huntington’s Disease Parity Act!

The HD Parity Act:

Goal: Make it easier for people with HD to receive Social Security Disability and Medicare Benefits How (Huntington’s Disease Parity Act) I.Updates guidelines used by Social Security Administration uses to determine disability for Huntington’s disease. II.Ends 2-year Medicare wait period for individuals disabled by HD. Our Strategy: Individuals contact elected officials, tell their story & ask their members of Congress to be cosponsors the Huntington’s Disease Parity Act, creating a broad, bipartisan base of support for H. R.842 and S. 968.

Where We Are Today:

245 cosponsors of H.R. 842 19 cosponsors of S. 968

(www.congress.gov) Our “Window of Opportunity” is Now!

How YOU Can Help: E-Advocate

STEP 1: Become an E-Advocate to get updates when Congress needs to hear from HD families –Go to www.hdsa.org/takeaction to send a letter to your Representative and Senators. All you have to do is add your personal story, and click send. –Once you do that, you will be signed up to get updates when Congress needs to hear from the HD community!

How YOU Can Help: #Social Media

STEP 2: Use Social Media to stay informed and advocate for HD –Post action alerts from www.hdsa.

• rg/takeaction to your Facebook and Twitter!

–Post infographics about the HD Parity Act to your Instagram and Tumblr account!

How YOU Can Help: Face-to-Face

STEP 3: Face-to-face communication is the most effective method to influence politicians. Your Reps and Senators are there to serve you – show them what you care about! HDSA can walk you through the whole process of setting up meetings locally with Congress! What do you talk about?

• What is HD?
• How has HD impacted your life?
• What is the HD Parity Act?
• How would the HD Parity Act change your story or your loved ones?
• Ask them to cosponsor the HD Parity Act!

Don’t know where to begin? Contact jsimpson@hdsa.org to get started!

Ways to Amplify Your Message:

Keep HD in the conversation by continuing to engage with your Members (even if they have cosponsored)…

• Having a Team Hope walk?
• Invite your Members of Congress!
• Having an HDSA fundraiser?
• Invite your Representatives and Senators!
• Got a letter to the editor published about the HD Parity Act?
• Send it to your Elected Officials!
• Were you in the newspaper or on TV?
• Share it with your Congressional offices!

Be creative, persistent, and respectful in all of your outreach – and become a useful resource to the offices!

Resources: www.hdsa.org/takeaction

Fundraising

• There are many different fundraising
• ptions and opportunities
• Team Hope Walks
• Hoops for Huntington’s
• Bowl for a Cure
• Wine Tasting
• Restaurant Nights
• Golf Outing
• Pancake Breakfast
• Resources for more help and ideas:
• http://nya.hdsa.org/fundraising-ideas

Tips for Fundraising

• Come up with an idea that pertains to you or your

community

• Get your friends involved
• Contact the Michigan HDSA chapter for assistance and to

raise awareness about your event

• Contact your local newspaper or radio station
• Talk to local businesses for sponsorships and donations
• Hand out and post flyers
• Share it on social media
• Ask for help!

Raising Awareness

HD Awareness Month

• The month of May is HD Awareness Month

where we dedicate a whole month to spreading awareness and educating people about HD.

• Different ways to spread awareness:
• Fundraising
• Hearts for Huntington’s
• Pinwheels
• Social media
• #LetsTalkAboutHD Campaign

#LetsTalkAboutHD

#LetsTalkAboutHD is a social media initiative during Huntington’s Disease Awareness Month in May to encourage families to share their experiences with HD. Use #LetsTalkAboutHD to educate the world about the devastating impact that HD has on families. You can post videos, photos or written stories – HD impacts every family differently and it’s time the world hears us! Campaign Goals

• Build HD awareness by encouraging people talk about HD on social media
• Engage people outside the HD community
• Inspire everyone to get involved with HDSA

#LetsTalkAboutHD - Posting Facts

#LetsTalkAboutHD - Make a Video

#LetsTalkAboutHD - Post Pictures

Hearts for Huntington’s

• Educates people about HD and spreads

the word

• You can ask local stores to help you sell

them and they can put them up on their walls to show local support for our cause

• Sell them to friends, family and co-

workers

Pinwheels

• Place them around your workplace,

your yard, local businesses

• Each one has facts on the pinwheel

about HD

• Post a picture and share them on

social media

• Order them online at:
• Orientaltrading.com

Getting Involved with HDSA

• Join the Board or a Committee
• Advocacy Committee
• Fundraising Committee
• Education Day Committee
• Host or attend a fundraiser
• http://michigan.hdsa.org/events
• Sign up for the Newsletter
• Volunteer

Getting Involved with NYA

• Join a Committee
• Advocacy Committee
• Research Committee
• Fundraising Committee
• Youth Services and Recruitment
• NYA Day/Convention Committee
• Get involved with local HDSA chapter
• Capitol Hill Marches
• Going to NYA Day
• Participate in talent show
• Go to fundraisers to represent NYA
• Volunteer to speak at education days

We’re Here to Help!

Jennifer Simpson Deb Boyd Manager of Advocacy & Youth Programs Development Director HDSA National HDSA Great Lakes Region

• p. 1-800-345-4372 ext 226
• p. 269-629-5452
• e. jsimpson@hdsa.org
• e. dboyd@hdsa.org

Chelsea Rink Miranda Spencer Krissi Putansu Advocacy & Communications Chair NYA Board Member Fundraising Chair HDSA Michigan Chapter HDSA Michigan Chapter HDSA Michigan Chapter

• p. 269-370-3997
• p. 248-892-5010
• p. 586-822-1730
• e. crink914@gmail.com
• e. michigannya@yahoo.com
• e. krissilynn18@hotmail.com

Final Thoughts…

Questions?