How did you start advocating for HD?

When I first found out that Justin, the father of my niece and nephew, had HD, I had no clue how deeply it would impact my life. I have witnessed firsthand the crippling effects of HD. When I first met Justin, he had a twitch and slurred his speech. Now, he walks with assistance and eats from a feeding tube. Justin is only 31 and lives in a full time nursing facility. His children have a 50/50 chance of developing HD, and I pray every day that neither of them will have to face the disease that is slowly killing their father. My niece and nephew hold a very special place in my heart, and I have made it my life-long goal to find a cure for HD. In order to do so, I have taken HD awareness on as my platform for competing in Miss Alabama. This summer I researched new ways to get involved in the HD community and that’s when I learned about the HD Parity Act. I started off by writing letters to all the congressmen and women of both Wyoming (my home state) and Alabama (where I attend college). After not getting the responses I wanted, I decided to take the next step. I knew I would be in D.C. this summer for an internship and decided that now would be the perfect time to meet face to face with my representatives and senators and share with them my story and ask them to co-sponsor the bill. I emailed each congressman’s scheduler, set up a meeting, and shared my story. It wasn’t nearly as scary or hard as I thought it would be, especially with the resources that HDSA has available.

 

What is the most rewarding part about advocacy?

The most rewarding part about advocacy?  Knowing you took a chance and spoke up for a greater cause.  I’ve always loved Gandhi’s quote, “You must be the change you wish to see in the world.”  Life is too short to sit around and wish that things could be different. If we want a change, we have to enact that change ourselves. I cannot describe all of the emotions I experienced before going into each meeting with a Representative or Senator. For the most part I was excited and ready to make my voice be heard, but a small part of me wanted to run away and let someone else advocate for the HD community.  When I walked out of those meetings and realized that I had overcome any fear, and had contributed to something much bigger than. I had done my part, and I knew my presence in their office had made some sort of an impact. Just taking the chance to speak up and knowing you contributed is one of the most rewarding things I have yet to experience.

 

What perspective do you bring and why is that perspective important?

I myself am not at risk of developing HD, but I still live every day in fear for my niece and nephew. The HD community is more than just those with HD, it’s their families and friends, who are also struggling to come to terms with HD. I brought my story, as well as Justin’s, to my meetings, and it was very beneficial for my congressmen and women to see that HD does affect more than just those with the disease. I feel all perspectives are important. Sharing a personal story can be very powerful, but being able to say you support this bill without any personal connection to HD demonstrates a widespread support for the HD community.

 

Why is the Huntington’s Disease Parity Act (S. 723/H.R. 1015) important to you?

The Huntington’s Disease Parity Act of 2013 is important to me because as an advocate for those with HD it is my goal to give them hope that this disease has taken away. Until we can find a cure, the best thing we can do is help those with HD to live a dignified life with proper and timely medical treatment and benefits.  Without passing the HD Parity Act, our government is failing anyone affected by HD. It’s time that our country stand behind the HD community and give them a chance to live a dignified life, free of entrapment from huge medical bills or lack of benefits, and allow them the pursuit of a better future.

 

Why do you think it’s important for others to get involved?

One voice can make a difference, but an entire crowd could change the country. The great thing about living in such an amazing country is that our government is based off of the representation of our people. We elect Senators and Representatives with the goal that they will vote according to our state’s beliefs and ideals; how we can expect them to know what those beliefs and ideals are without explicitly stating them? Our representatives and senators want to hear from us. As I experienced firsthand with my meeting with Representative Roby of (AL) one voice can make a difference. Had no one gone and talked to her about this issue, she may have never co-sponsored H.R. 1015. It takes one brave person to step up and get the ball rolling, but one person can only do so much. For our congressmen that are still on the fence about co-sponsoring, the more voices raised, the more they have to acknowledge the issue being presented.  Hearing your stories and knowing they have support back home helps them to justify co-sponsoring HD legislation.

 

What is the best way for someone to get involved?

There are so many ways to get involved! You don’t have to know anything special to get started. HDSA has letter samples you can use in the House and Senate, so it’s VERY easy! All you have to do is go to the HDSA E-Action Center, www.hdsa.org/takeaction and enter your zip code. You can also use the E-Advocacy center to publish a letter to the editor to your local newspaper. I used the HDSA tools to publish my letter to the Casper Star-Tribune.

 

HDSA also has a great toolkit available on the HDSA Advocacy website, www.hdsa.org/advocacy. They have plenty of resources and information as well as a huge network of other advocates active on Facebook (HDSA Advocacy has a Facebook Page, and a Group. I’m extremely blessed to have made contact with HDSA before my meetings and to have been able to use their resources, in my meetings. Getting involved can seem like a huge task when you try to do it all on your own, and that’s what makes HDSA so wonderful. They are very supportive and will do anything they can to make your advocacy experience an amazing one!

Contact Jane Kogan at jkogan@hdsa.org for more information about how YOU can get involved!