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Rare Disease Week: Havi Martinez

Advocacy Stipend Attendee Summary by Havi Martinez

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Experiencing Rare Disease Week in Washington, D.C. was incredible! I am so grateful to the National Niemann-Pick Disease Foundation for supporting and helping to fund this opportunity for myself and the other rare disease advocates in our group. For me, the week started Tuesday, February 25th with the Congressional Caucus Briefing with multiple speakers that really shared the importance of what we would be doing throughout the week and what they were doing in their own sectors to promote Rare Disease advocacy and research.

After the caucus briefing, all of the Rare Disease Advocates who were present a the time joined together for this photo on Capitol Hill. The Rare Disease Legislative Advocates handed out super toasty scarves with pockets to all of us!  

In the evening there was a screening of Tin Soldiers at the Reagan Building. I highly recommend seeing this film, but have your tissues ready! The screening was held at the Ronald Reagan Building and provided awesome networking opportunities. It was a long and emotional day, but so exciting to meet so many other people who GET IT. 

Wednesday was all about learning. The keynote was given by Mark Dent – he is the father of an adult child with a rare disease and has an incredible story of perseverance. He is also the chairman of the EveryLife Foundation for Rare Disease and on the board of directors. He was very kind and approachable and gave hope to the group with his thoughtful speech. From this point there were breakout sessions explaining what we would need to do to help legislators understand what our mission is and why it is so important. We were split into groups by our state and it was really fun to meet people more local to us and exchange information and resources.

Wednesday evening I attended the Research America program on Celebrating Rare Disease Research Advocates: Strong Together – this was an awesome opportunity where I was able  to meet C. Grace Whiting who is the CEO of the National Alliance for Caregiving. She was so kind and knowledgeable and seemed to genuinely care about our kids and families (plus she had a fabulous sense of humor and great style!). They had an awesome backdrop with papers to fill out about what rare means to you (mine was for our Mason!). 

Thursday was all about meeting with legislators and their staff and explaining what we need to support our loved ones. It was exciting, draining and educational. The RDLA had it set up so beautifully and simply to get our point across in the most effective way with talking points and handouts along with encouragement to share our own stories and what matters to each of us and why. 

Thursday evening was the Rare Artist Reception at the Hart Senate Office Building. Rare Disease artists had their work displayed and it was a lovely way to end a very full day. Shannon Reedy and I had a charming mother and daughter from Rhode Island join us along with Dr. Rami Ballout who does such great work supporting our Niemann Pick families and learning as much as he can as often as he can! (Pictured are a rare disease artist presenting her work and our group of advocates with Dr. Ballout). 

On Friday I was preparing to head home and happened to run into Kari Ezell and Ricky Edwards, parents of Corbin who passed away in September from Niemann-Pick. It was such a special and unexpected surprise to meet them and share a hug. 

This experience taught me how much our voices mean and what we can accomplish by sharing our stories and supporting other rare disease advocates. We are all in a boat no one wants to be in, but there is so much love and empathy in our community. Much love to all of you!