Header Ads


A Synopsis of my Trip and Experience at The Rare Disease Patient Advocacy Summit

      Some of my readers and friends with GNE Myopathy have asked me to relate my experience of my trip to the Patient Advocacy Summit.   I thought that  it would be a good idea as it would  shed light on  using public transportation from the central coast area of California to Huntington Beach, California, approximately 360 miles away. When I travel long distance, I use a power wheel chair as such a chair would  help me to maneuver uneven terrain better than if I used a walking stick. 
      I got up quite early to prepare for the trip to Huntington Beach.   I got dropped off at the Amtrak train station at 8.30 a.m.  The Amtrak  bus came about 9 a.m.  and the driver loaded me sitting in the wheel chair on a lift  into the bus.  He secured the chair with fasteners on the floor so the chair would not move. After about 5 hours I arrived in  Santa Barbara, and I  got on the Amtrak train.  I like the train as I feel a little more independent, and the conductors are very attentive to people with disabilities.  I can use the bathroom with ease and effortlessly navigate the aisles.  I can also get food, drinks, the internet, and meet interesting people on the train.   Most of the view  is quite stunning of the Pacific ocean.  Four hours after I got on the train, I arrived at Santa Ana train station.   I waited about thirty minutes and the OCTA paratransit (Orange County Transportation Authority) picked me. up.  
     After another hour on the paratransit I got to the hotel only to find out that the room (one with a roll-in-shower) I had  reserved was given to someone else!   After sitting in a wheel chair for more than than 12 hours, I was absolutely exhausted and frustrated.  The following day however,  I was quite  fortunate to find another hotel that had a roll in shower and accesible accomodations. The trip back home took  a little longer as the train, paratransits, and buses all missed  their scheduled arrival time.
     I see I have quite a long paragraph about my challenges.   I usually refrain from discussing such challenges as  I know that many  others experience far more more challenging situations than I do.  I hope I have not belittled  the physical  challenges of any of my readers.  This recount of my trip is meant to shed light on what it is like to use public transportation for someone in a wheel chair.  Although the trip took 12 plus hours, I am so grateful that I was able to attend the Global Genes Advocacy Summit.
     A redeeming value of my long trip however was the place where the Advocacy Summit was held was a beautiful scenic hotel, and spa environment.  Both Global Genes and the Hyatt Regency staff were absolutely attentive and helpful.  I think I was one of three persons in a wheel chair who attended the summit.
Let's take a pause, to enjoy these beautiful flowers!

    There were approximately 300 plus attendees and presenters at the Summit.  Many of the topics discussed were  in general applicable to people with GNE Myopathy and other rare diseases.. There were presentations on Innovations in Science, Making Peace with what you can't control and the Power of Putting Information into the Hands of Patients. Other than myself, no others with GNE Myopathy attended.  
     I have made some good connections, learned about other rare diseases, and about the policies dealing with rare diseases.  An interesting fact is that there are about 7,000 rare diseases  for which  only 500 approved therapies exist.  I especially liked the "deep dives" sessions where I could get into smaller groups to listen and discuss  more deeply  a topic that had been presented before.  Finally, I feel full of gratitude to have been able to attend this Summit through which I have become very aware that we in the rare disease community need to collaborate, and share information, and that patients need to take an active role in influencing policies, research, treatments, and cures.
      Please check out Global Genes site as they have many tools to inform and educate patients. Check out their tool kits. http://globalgenes.org/

Here are some links that some of you may want to explore for tips etc.
Caregiver Action Network:  http://www.caregiveraction.org/
Empowered patients:  http://empoweredpatientcoalition.org/
Ben's Friends:   http://www.bensfriends.org/about/mission/

No comments:

Powered by Blogger.