Well it was interesting I’ll give you that. I met some remarkable and brilliant people. People who are doing their best in a sincere way to make a difference. I met 2 ANGELS who took care of me on my flight home. Who knew ANGELS lived in Evergreen Park! But they DO!
I had the opportunity to reconnect with old friends, meet new committed and inspired people and thoroughly enjoyed being in our nation’s capital.
The ALS Association doesn’t know it but I went there to this conference to see how they operated and to evaluate wether or not to fully get behind their fundraising efforts…(especially since several friends of mine are doing the upcoming walk in my honor) frankly I was not overly impressed with the organization as a whole. There is a lack of continuity and accountability in their speaking, no clear promises or objectives with deadlines, and a penchant for not answering questions in a straightforward fashion. The frustration of the patients present with the lack of results was palpable. There was also alot of numbers being thrown around that didn’t quite add up, and the feeling that some leaders of ALSA were unprepared for their speeches. This isn’t just my opinion but was a sentiment echoed by presenters, researchers and attendees alike. It seems that they would benefit from a tightening of their focus, and standardizing the efforts of their chapters, or at least offer folks some structures that would support them making a difference in their communities. If you are listening ALSA~ I have some ideas for you that would make a difference: especially in the areas of planning, structures that empower people and also patient services. I know you don’t mean to be disrespectful or appear lethargic but you do none the less, especially when you appear to be unprepared. I dare you to contact me and create a new way of operating. Just so you know this is my area of expertise… I used to be personally accountable for the productivity and performance of over 300 volunteers in a 7 state area and produce 25-70 events per week.
Having said that there were pockets of brilliance: ie. the St. Louis Chapter’s Respite program for Caregivers was extraordinary and a perfectly replicatable model that could and should be implemented throughout the country ( More on this later!) and the Chicago chapter has an effective fundraising arm and they occured as one of the most organized chapters. I was informed by many of the breakout sessions, and particularly interested by the brain research being pioneered by Theresa M. Vaughan at the Wadsworth Center, NY State Dept of Health and Dr. Melody Moore Jackson at Georgia Tech, as well as the research in the cognitive impact of ALS by Beth Rush from Mayo Clinic in Florida and the extraordinary work of DR. Micheal Benetar and his team at Emory University in the area of Familial ALS. The 10% of ALS patients with FALS appear to be underserved in many ways and Dr. Benetar’s team is looking at ways to impact this as are several families who I had the profound priveledge to meet with.
All in All, I’m glad I went. It was my last independent trip to be sure, and it took more energy from me than I thought even though I allowed time for rest and restoring myself. I had a few great meals, some excellent Champagne~ Drappier Grand Cru 2000, some delish mojito’s and better company.
Here’s my take on the fundraising: Walk the walks… I understand the importance of doing something ! I’m just saying take a look at where the money you raise is going… ear mark it for research, or respite or whatever your interested in, you have that right. Tell then what you want them to do and then hold them accountable for doing what they said.
I am looking forward to creating strategic partnerships with many of the people I met at the conference.