Melissa's Rare Disease Conference Wrap Up

March 12, 2019

 

During Ginny’s lifetime, I always thought of my role as simply being "Ginny's mom."  Even though I spent my days fighting for equipment, or for her to see a particular doctor or therapist, I certainly never thought of as an advocate. Usually without realizing it, many parents DO advocate for their children whether they are born with a rare disease or not- we just want to make sure that our kids have the best opportunities to live happy and healthy lives.   

 

However, most days, living in the world of peroxisomal disorders is an intense battle in the trenches. EVERY day, and I do mean EVERY. DARN. DAY. is training in advocacy. From fighting for equipment to reading every journal article available and working to become the most educated person in the world about our child, living daily life with a peroxisomal disorder is advocacy training for families like mine. 

 

I was so pleased to recently take a group of six other GFPD community members to Washington, D.C. February 24- 28th to participate in Rare Disease Week on Capitol Hill. Corin Chapman, Julia Ridgway, Katie and Ted Sacra, David Lapidus, and Chris Ostertag were all incredible teammates and it was a great week of learning how to better advocate for our children and our organization. 

 

The events of the week were hosted by EveryLife Foundation through their Rare Disease Legislative Advocates program, as well as the Rare Disease Congressional Caucus (an initiative of RDLA) and the NIH Clinical Center.  Each day we learned something new, made connections with other rare disease advocates, and saw first-hand how our stories could make a difference. 

 

Monday

RDLA hosted a full-day Conference to update the rare community on pressing legislative issues where our voices should be heard. The RDLA Conference was chock full of insightful information and sessions all geared toward helping rare advocates hone their skills.     

 

For most of the day on Monday and Tuesday, our GFPD team was broken up to participate with other advocates from our individual states.  David Lapidus and I worked with the team from Oklahoma, while Katie and Ted Sacra spent those two days with advocates from South Carolina, Corin and Julia made new friends with the Illinois team, and Chris Ostertag had the great fortune to be linked up with Darlene Shelton, Founder, Danny’s Dose for his meetings with the Missouri delegation.  It was a great collaborative experience to be placed in groups with other advocates (outside of our GFPD community) and work together to reach common goals.   

 

Tuesday

We spent the day walking miles and miles and miles on Capitol Hill, crisscrossing every House and Senate office building and sharing our stories with staffers and members of Congress. By the end of the day on Tuesday, I think it’s safe to say that all of our feet hurt! (Thank you to Katie Sacra for the awesome pics of me changing out of my dress shoes into tennis shoes Tuesday night!)  

 

Wednesday

Members of our team had follow-up meetings with some staff on Capitol Hill and also attended the Rare Disease Congressional Caucus meeting where we heard from patients, caregivers, and allies in the field of rare diseases.  The Kennedy Caucus Room in the Russell Senate Office Building was bursting at the seams with advocates and congressional representatives and staffers, and we heard reports from NORD and Global Genes as well as Dr. Chris Austin, Director of NIH/NCATS.

 

Thursday

The week ended with Rare Disease Day at the NIH Clinical Center, where we were able to view posters from researchers and rare disease researchers from around the world and hear an inspiring and engaging talk from GFPD friend and the Director of the NIH, Dr. Francis Collins. 

 

The week was a true success in so many ways.  We enjoyed making connections with other advocates from our individual states and helping spread the word about legislative initiatives that will be beneficial to the GFPD community. I hope you’ll consider joining our team in DC next year.  While I certainly did not view myself as an advocate during Ginny’s life, I’ve learned how empowering our stories can be, and that we CAN make real change happen if we all work together. 

 

 

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