February 2020 was Gwendolyn and my first Rare Disease Week. Gwendolyn is my 21 month old daughter who has PBD/ZSD and she was my travel buddy for Rare Disease Week 2020.
Rare Disease Week 2020 was an amazing experience. It gave me the opportunity to bond with other GFPD families—it’s difficult not to bond when you have 11 people in one AirBNB (nothing like a shower schedule to bring everyone together????).
On our first night in DC, our GFPD family prepared for battle. We reviewed legislation, talked through strategy, and learned additional information regarding the issues relevant to the rare disease community that were at the top of our list. By the end of the night, I felt overwhelmed and blessed to have this family.
The next day, February 26, we met with advocates from each of our particular states to prepare for our state meetings on the Hill. I met with other advocates from Iowa and learned their stories. We received a lot of information on what to talk to our government officials about. But frankly, our training at the GFPD house the night before did more to prepare me for our day on the Hill.
February 27…the big day. Traveling with a 21-month-old, a stroller, a car seat, a breast pump and a diaper bag was not easy. Thankfully “Iowa nice” was in full force and the Iowa advocates were a huge help. We had five meetings that day, three Representatives and two Senators. While each meeting was successful, our meeting with Senator Tom Grassley topped them all. He is the chair of the Senate Finance Committee and a senior member of the Senate. During our meeting he agreed to join the Rare Disease Caucus! Huge win for Rare Diseases!
Before DC, I was a mother of a kiddo with a rare disease. Now, I am a rare disease advocate. Watch out change, we are coming for you!