Last month we headed to Washington DC for some sightseeing. the annual LHON Symposium and a day on Capitol Hill. It was hot, humid and unforgettable!!
My mom and I adventured through historical monuments the first two days of our trip. As we trekked over 32,000 steps in one day – we covered the Lincoln Memorial, Washington Monument, Veterans Memorial the White House and Arlington Cemetery all by foot. The reason we walked everywhere was because it was going to be easier to kind of see something while walking rather than in a tour bus. The morning we started was gray and gloomy, which is an awful vision day and makes everything so much harder to see. Luckily by noon, the fog was beginning to burn off and I was able to finally see a few feet in front of me. I was totally convinced to climb all the stairs at Lincoln Memorial which is quite the task knowing they are all white stairs (so that miens no contrast at all) and my mom accompanying me who is scared of heights. Yes, we made it to the top… eventually! haha Here’s a couple great selfies of me and mom! The trip was great and my mom really learned to be super descriptive everywhere we went. She was my personal tour guide in the American History Smithsonian and we both learned so much.
I wish I took advantage of all the services that were offered at the Smithsonian’s for those with disabilities. Check out this website if you are intrested, – if you book a tour one week in advance, you could get a tour guide through every Smithsonian depending on your disability – SO COOL!! The walk ways were incredibility accessible as they chirped when it was time for us to cross and we were given so much time to cross (I think it was 83 seconds? Someone must have done some sweet research for that!!) So you can cross the street safely and then jump on one of the many modes of transportation all over the city! It was great!
Then we headed to the LHON Symposium!! It was like this awesome Homecoming with friends I have connected with over the last year!! It was great to be able to chat with so many I just met in person for the first time but have connected with through the LHON Live call (a conference call Maria, Andy and I host every month for LHON friends around the world!) There is just something comforting about being around all of my LHON friends. You can ask any one of us questions that you wouldn’t ask others. “So what can you see right now?” or as I get really close.. we ask “Can you see me yet!?” Umm personal space?? haha nope, not with us!
We were joined by three top doctors in the world studying LHON. These men are who we look for for hope, answers and advice. I admire and am so thankful for their dedication to LHON. We also heard from so many within the LHON community that shared their journey. We laughed (a lot) and cried as we connected to their stories. I was so inspired by so many that instilled that LHON is just a hurdle. Everyone has a hurdle and you have to find something that makes you happy to help you cope. They shared their stories as a goalball player, Boston marathon runner, being a mom and newly married. I loved these stories as we are all still normal people trying to find our way!
The next day we headed to Capitol Hill with the United Mitochondrial Disease Foundation (UMDF) and wow, were they organized!! So i learned that the term “Rallying on the Hill” was no work out in the blistery DC sun. It meant you had a set meeting scheduled with your local Congressman, Senator or staffer. Once I knew that, I changed up my outfit from shorts and a T-shirt to a great dress and heels… of course!! So as the only Arizona representative for the UMDF and LHON, my mom and I headed into the House of Representatives feeling cool, calm and collected… haha kidding! We were bouncing full of energy and sweating from the humidity but we were ready!! We met with Congressmen Matt Salmon and it was incredible. For the 30 minutes I was in his office, I had his full attention. I felt like I made a difference. I explained everything from what UMDF stood for to how LHON has changed my life. I shared my story of the LHON Conference to everyday life. Congressman Matt Salmon agreed to support the bill the UMDF and I are fighting for. It was a success!! We also met with an assistant to John McCain. It was so funny when he turned to me and asked, ” Where do you get your energy?” My response is obvious, “When you care so deeply about something, the energy comes from all directions!”
Congressman Matt Salmon will be joining us for my LHON fund-raiser, Dinner in the Dark, which will be held in October. WOOHOO!!! Trying to make moves one day at a time!!!