ALSA just announced the establishment of a new fALS Summit for 2012. This half day meeting will take place immediately prior to the 2012 ALSA National Advocacy and Public Policy Conference in Washington D.C. on May 13 beginning in the morning.
It's going to be great to be able to interact with our peers, and not having to choose to attend a fALS breakout during the larger meeting over another important topic.
They are soliciting topics and comments for meeting content by e-mailing fals@alsa-national.org. Just a few that were suggested at the UCLA fALS Meeting a few days ago were the following: Clinical Trials 101, Clinical Trials for fALS, Fast Tracking Successful Drugs/ Compassionate Use, Discovered Genes, Auto Dominant vs. Recessive Genes, Genetic Testing and Counseling, Ancestry Research, Discussions with Children/ Relatives/ Co-Workers/ Friends after Diagnosis/ Financial Planning, Health and Life Insurance Disclosures and Planning, Volunteer and Advocacy Opportunities, Living with ALS. This list is by no means all inclusive, just a starting point. Please weigh in!
My personal view is this is a very positive step and way overdue. I am awed by the contributions from people like Augie Nieto with Augie's Quest and the MDA, and Dean Rasmussen, the father of ALSA Advocacy. These individuals are not from Familial ALS Families and have still made huge, long-term impacts on the fight for a cure.
Their actions should motivate those of us that are in the fALS community. We all need to step up and participate in the cause in anyway possible. That may mean participating in clinical trial studies from our healthy relatives, volunteerism, fund raising, advocacy, or any other contribution you can muster. After all, it's our parents, children, siblings and relatives!
Pick an organization, any organization. Maybe it's one of the two national full service organizations - ALSA or MDA. Possibly one of the many researchers like ALS TDI, Packard, Northwestern, Mass General, Emory, Methodist, or UCSF. Groups that raise money for one or two research entities like Augie's Quest, Project ALS, Les Turner and the list goes on. Many are very worthy and even though there is some redundancy in their efforts I have come to view their overall contributions as cumulative. When you are part of a family with a hereditary terminal illness that is very prevalent it is very easy to be negative. Let's challenge these organizations to improve in a positive way as well and be as efficient as possible, but focus as individuals on things we can control.
E-mail 2012 fALS Summit suggestions to fals@alsa-national.org.
