Written by Robert Ostrea
This past week was a very enjoyable and productive week for the more than 400 patient and parent advocates representing one of the more than 7000 rare diseases known to mankind. The last day of February is internationally recognized as Rare Disease Day. This date was chosen since February is the only month with 28 or 29 days and thus the “rarest” day of the year. The events of the week provided advocates with several opportunities to network with other advocates, learn about proposed legislation that may affect individuals with a rare disease and, most importantly, meet and educate our members of Congress on the importance of continued and increased funding for rare disease research through agencies such as the National Institutes of Health (NIH) and the Food and Drug Administration (FDA).
This year, advocates gathered together to collaborate on best practices and brainstorm new ideas to increase fundraising and further awareness to each of our individual causes. A disease is considered “rare” in the United States when it affects less than 200,000 people. Although each individual disease group is small, there is power in numbers and when rare disease advocates join forces to support mutually beneficial causes, they become a much more powerful force. It is estimated that 1 in 10 Americans have a rare disease and more than half of those are children. 95% of rare diseases have no cure or effective treatments. My youngest daughter, Hannah, was born with a rare, genetic disease called Gaucher Type 2/3. This is a terminal disease that affects around 300 people in the world. The life expectancy for this disease ranges from 9 months to the early 20s, depending on the severity of the disease. Hannah lived until the age of 3, succumbing to the affects of this horrible disease. This is why events like Rare Disease Week are incredibly important to make sure that our needs are made known.
Representing rare disease patients and advocates from the State of Nevada, I had meetings with staffers at the offices of Senators Heller and Cortez-Masto and Congresswoman Jacky Rosen. This was my 6th year participating in these events and this year I brought my oldest daughter, Abigail, who was extremely excited to get involved. Growing up with a younger sibling who experienced multiple doctor’s appointments, hospital visits and surgical procedures, Abigail knew first-hand what it was like to care for a child with medically-complex conditions. This was a fantastic opportunity for her to relay her experiences to her member of Congress and meet other youth advocates from across the country. She was given an assignment by her teacher to write a 2-3 paragraph essay on her experience and she already has 3 pages done!
While we were waiting to meet with Congresswoman Rosen’s legislative aide, we ran into our hometown city mayor and councilwoman, Henderson Mayor Debra March and Councilwoman Gerri Schroder, who were in town to meet with the Nevada delegation on city issues. Councilwoman Schroder presented our organization, the Little Miss Hannah Foundation, a city proclamation designating July 25, 2012 “Little Miss Hannah Day” during our first community event at The District in Henderson. Hannah was born on July 25, 2008 and scheduling the event on her birthday was bittersweet as we celebrated her life by helping other families throughout Southern Nevada caring for kids with rare diseases, medically-fragile conditions or who are in hospice/palliative care. We were able to connect with the city delegation and plan to meet with them later in the year to discuss issues involving local kids who need continued support.
All of our representatives are favorable towards our issues and our causes – who would be against trying to find cures and treatments for diseases? The challenge is to make sure that these issues, and the specific legislation being proposed, is at the forefront. This is why these meetings can not stop at once a year. Consistent follow-up is needed to ensure that our representatives understand and support the issues we care about. I’m appreciative that my daughter had the opportunity to experience the democratic process. We even had time to tour the White House and see some of the areas where our Presidents have entertained foreign and domestic dignitaries. It was a very historic experience!
I will continue to advocate on behalf of those suffering from rare diseases on all levels of government. The only way government will respond is if we, the people, provide them with the reason to respond. I look forward to continued communication with my members of Congress and I can’t wait to participate once again next year!
