Two days ago I traveled to St.Louis, Missouri for one of the most informative and interesting seminars I have been to in some time. I dawned my Patientslikeme.com shirt and drove to a meeting on ALS. At this time not knowing what to expect but always wanting to learn about Neurological Disorders and know this is the one place to go for straight answers. Why me with Parkinson's? Because I have found diagnoses change and what applies to one Neurological disorder often applies to another. So many of the symptoms for ALS and MS show up in different forms of PD. The title of the seminar was "Brick and Mortar" Non profit B iotech's Opportunities for Preclinical Drug Development. The statistics are staggering...30,000 patients in the U.S., 5,000 plus every year...Those diagnosed have a 50% mortality rate in 18 months and some 20% survive 5 years. This disease can be sporadic (90%) or genetic(10%).
Thank heavens if you are diagnosed with ALS you have a wonderful place to go for clear and caring information for both you and your caregiver by going to . ALSTDI focuses on two things molecular mechanisms of disease onset and progression and therapeutic development.ALS-TDI was founded by The Heywood Family in 1999 and has an annual budget of $10 million with 42 employees and 25 full-time scientists. The driving principle behind all of his is: To combine power of a 501(3)c non profit with the best practices of a for profit biotech or pharmaceutical company in the hope that the productivity gap will be breached and a cure or better treatment found.
If you are interested and you should be. check out the ALS Forum:
The largest Online Discussion of ALSTherapeutics
3,000+members 40,000 posts
Topics include Therapeutic and Clinical Trials to living with ALS and Advocacy.
All of this comes with the chance to be anonymous, open to the public and it's FREE.
Let me give you some numbers and sites and you check it out:
Questions and Comments? email@example.com 617-441-7200 or www.als.net/forum or Patientslikeme.com