Monday, June 18, 2012

UMDF 2012 Conference

WHEW! We’re home from what felt like a very long trip to DC for the UMDF 2012 Conference. There is a lot of information I want to share – some just so that I can look back on my notes from time to time to remember what all I learned – so bear with me or skip the long boring parts of these posts. I'm going to save the photos for the long, technical posts to "liven" them up a bit.
The short post:
We left Wednesday morning for Washington DC / Bethesda is where the hotel was at. Went to a Day on the Hill training that evening and then pretty much lounged in the hotel room and went to bed.
Thursday: Day on the Hill. The buses left at 7:30 a.m. for Capitol Hill. I had an 11 a.m. meeting with a representative from Sheila Jackson Lee’s office (our local district person) then that afternoon everyone from Texas, about six of us met with representatives from Senator Cornyn and Senator Hutchinson’s offices. The meetings went well. That evening Neil and I took the subway to Georgetown and walked across the Key Bridge. We ate dinner at an Italian place and happened to see Juan Williams a FOX commentator and his wife come in to eat too.
Friday: Day 1 of the conference. Up for a 7:30 a.m. start. I attended meetings that related to What is Mito, Clinical Trials & EPI-743, Networking lunch with people from our region, GI/Motility issues, Immunology, Financial & Legal issues for special needs. We had a small break and then dinner and awards banquet. The keynote speaker was Dr. William Gahl, director of the National Institutes of Health Undiagnosed Disease Program. He shared some incredibly complex info, but all very interesting. They honored some really incredible people then announced who was receiving grants for research. By the time I finished visiting with new friends, it was close to 10 p.m.
Saturday: Day 2 of the conference. Up for an 8 a.m. start. I attended meetings that related to: Navigating the Medical World with in-patient and out-patient visits, Nutritional considerations, Living with Mito – tips, Ask the Mito Dr. Panel, Scientific/Clinical meetings Roundup. The last portion of the day was about testing and diagnosis and I had really had all I could handle. Neil and I ducked out and hung out in the lobby waiting for our friends to pick us up.
Saturday night: Andre, Bridgette and their 2 year old son Cooper picked us up and off we went to Annapolis, Maryland for some Maryland Blue crab cracking. We went to Cantler's and while we were waiting we tailgated in the parking lot. This place is like THE place to go. We had a great time catching up, cracking crab and watching their son Cooper hammer away at crab legs. We headed back to their house in Vienna, Virginia.
Sunday: We got up, had some breakfast and off we went to DC for "Andre's Driving Tour." We saw everything! Stopped and ate brunch at Old Ebbit’s Grill which was spitting distance to the White House.  Did some more driving tour items and then off to the airport. Got home around dinner time to a VERY happy Will. I don’t know who was happier to see each other. Ate dinner, bath and went to bed.
It was an amazing experience. I met so many new people, learned a lot and had fun. I don't know why, but I wasn't expecting it to be so emotionally draining. I knew it would be hard, but it kicked my bootie - mental, emotional, physical, social brain drain and brain dump.
Mark your calendars for June 14/15, 2013 for the UMDF Conference in Newport Beach, California!


  1. I'm so glad you got to do it and can't wait to read more details. Glad y'all could squeeze in some fun too. Welcome back!

  2. dude - you were all over the place! Looking forward to hearing more about what you learned. And about that crab - yum.

  3. Great to hear some more details - it must have been a whirlwind week. It will be interesting to hear what you find tucked away in all the notes you took.

  4. I'm glad you got to participate in the process to getting more help for MITO. Luckily you got to have a little fun too. Thank you for going through the emotional roller coaster once again I know it will make a difference in the long run!