Rare Disease Day 2015 (February 28, 2015) was a busy day of advocating for many of the 1 in 10 Americans with a rare disease. Those of us with and affected by Friedreich’s Ataxia did our part. We joined FARA’S social media campaign, Move Your Way for Rare Disease Day, by taking pictures and posting them on FARA’s Facebook timeline. We spent February trying to raise awareness and letting people know, to use the National Organization for Rare Disorder’s (NORD) motto, “Alone we are rare together we are strong.” The following are snippets about the days some of us spent at our statehouse to advocate for rare disease causes that day.
February was a snowy month in Connecticut, as the date for Rare Disease Day approached. I was nervous that all the passionate collaboration done by the committee would be wasted. However, we were graced with a beautiful sunny day, which resonated with the compassion of the event. Speakers from the capitol included Representatives Matthew Ritter, Lonnie Reed and Vincent Candelora. Industry speakers included Paul Pescatello from the Connecticut Bioscience Growth Council and compelling life experience patient speakers Alexandria Bode, Mary Teicholz and Peter Mulliner.
The organizing committee worked hard to provide an informative event that raised awareness for individuals with rare diseases as well as highlighted decisions made on a daily basis through legislation. We stayed focused with the help of NORD’s own Kristen Angell and Representative Candelora’s Office worked hard to make the day run smoothly.
I was humbled and grateful to have been the NORD State Leader for this event. It was attended by many and embraced by all who were involved. I continue to be amazed by the work of NORD and their ability to change the world for people with rare disorders. Events such as these make the world a gentler place by empowering those served by NORD.
On February 27th, I held an information table at the New Hampshire State House to raise awareness for Rare Disease Day 2015. I had the privilege of representing both NORD and FARA! I had great flyers and brochures from both organizations that I handed out to all of the people passing by. A few legislators that I had contacted prior to the event stopped by my table anxious for more information regarding rare diseases and the importance of doing more medical research as well as the need for funding, in order to successfully develop some lifesaving cures! I was fortunate to be able to speak to numerous NH State Representatives. I'm am so happy to say that the New Hampshire Senate presented me with a resolution acknowledging NORD in recognition of their efforts "organizing a nationwide observance of Rare Disease Day"
How cool is this? We truly are all in this together, and we're lucky to be!
On February 24th, I had the honor of attending the Rare Disease Day event at the Pennsylvania State Capitol in Harrisburg. The event served as a purpose to raise awareness of rare diseases to the politicians of Pennsylvania. I, along with my mother, the Welsh family, Kyle Bryant, and FARA were in attendance along with patient advocates from a couple other rare disease organizations. There were several speakers, including Kyle, who spoke of their connections to rare diseases. Kyle’s speech was by far the best and most inspirational, which I’m sure comes as no surprise. He spoke eloquently about his story of being diagnosed and how much his life has been affected. After everyone spoke, there was a light lunch and everyone was able to eat and converse.
My favorite part of the whole day was when I met with state representative Kevin Schreiber. (I also had the opportunity to meet him several days prior when he was a guest speaker in my government class at York College.) I put my advocating skills to use and told him about the Rare Disease Day state event. He happily stopped by and even took my mom and I on a quick tour of the State House room! Not surprisingly, he did not know what FA was and showed genuine interest in learning more about it.
All around, it was a great day with FAmily and friends, all while raising awareness in hopes for a treatment or cure.
I attended my first Massachusetts’ Rare Disease Day (RDD) this year. I was excited to learn more about the legislative work I can do to find cures, for my own disease, FA, and all/any rare disease. I think a cure for any rare disease is a victory for all of us with rare disease. My dad was my partner in crime as we made our way through eight feet of snow (I am not kidding! It wasn’t snowing but we are happy winter 2015 is over.) I also had a broken shoulder. (I’ll be fine! But getting in and out of the car was a process…) Luckily dad found parking!
MA RDD is organized by the Massachusetts Biotechnology Council (MassBio), a non-profit biotechnology trade organization. They do it all: schedule speakers, arrange for food; prepare the media releases; identify pertinent legislation; make arrangements with legislators for RDD participants to visit; and more. There were several great speakers including Megan Duff who, along with her dad, spoke movingly about her life with neurofibromatosis. Neurofibromatosis is a disease which causes tumors to grow on her nerves at anytime. She powered through multiple surgeries and an aggressive form of breast cancer. Yet, her optimism was palpable even as she faces a future not knowing when/if the next tumor will come and what it will mean. After the speakers, when people were mingling, I introduced myself to folks from Pfizer.
Not unimportantly, the legislation targeted that day, Cap the Co-Pay, will help people with rare disease live better by limiting the annual amount of co-pay people have for prescription drugs. Thanks to MassBio my dad and I each got a folder telling us where our legislators were and what to say to them.
As I was waiting for my dad to get the car, I recognized Peter Saltonstall, the president of NORD, and introduced myself. When dad came I said: “Good thing I am not shy anymore.” Looking at me as though I was speaking Greek, he said: “You were never shy.”