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MaxEidswick

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PALS
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08/2013
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US
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Texas
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Pinehurst
Nancy Frates with Pete Frates and 4 others
Hi Everyone - Just returning from ALSA meeting in Tampa. Briefly here is my update:
1. I am overwhelmed to have met all the staff who work in National and all the Chapters around the US. Most of them have been on the horrific ALS journey with a loved one. They are some of the most dedicated, compassionate, kind and wonderful people I have met. The haters of this organization should remember that one error does not paint everyone. There are an enormous amount of patients that rely heavily on ALSA for many, many avenues of support. Remember who you are really affecting if you continue to try destroy their credibility.
2. The executives of ALSA are caring and dedicated and believe me have the patients interests top of mind. I think the Quinns, Ted and I, who absolutely spoke for patients and families, were held in the highest regard and respect and were included in all high level meetings.
3. As far as Genervon situation. EVERYONE at the conference is absolutely in favor of bringing therapies and drugs to the ALS patient as soon as possible, That is the point we all need to understand. The petition that is out there is specifically endorsing this drug. The organization and most of their professional collegues feel there isn't sufficient data to endorse the drug specifically. I get it - believe me if the pill was in front of me- Pete would take it. But that is not the point. The company has been evasive and not just from ALSA's perspective - most ALS professionals have their concerns. The last thing these dedicated people want to do is endorse false and/or deceitful hope for our community. So let's be clear - the people that we have all been in the trenches with us, who we KNOW put the ALS community in the forefront of every decision they make - NONE of them are endorsing this drug - however they endorse the PATIENT'S RIGHT TO CHOOSE AND ACCELERATED AND EXPANDED ACCESS. Maybe we should have a petition in concert with the ones we know and trust saying just that - any drug or therapy that shows sufficient vetted progress by known ALS researchers, physicians and or organizations - one we can all get behind!
4. And I am sorry - but what is going on on social media with the finger pointing and hateful, negative and frankly disturbing comments is wrong. If the IBC proved anything - together we achieve more! We have waited a long time to be in the public consciousness and now that we have the eyes, we are divided, unprofessional and showing exactly the opposite of what we need. A unified, positive, proactive community who will take the public's amazing support and funding and work together towards a treatment and cure. Please stop the hating - it is destructive!
5. ALSA rolled out exciting programs in the areas of research and how the IBC dollars are working. There are over 500 RFP's at ALSA and they are going through the approval process right now. Also - more $$ into care services-very important.
6. For those of you concerned about the lack of patient services on this particular agenda, I found out that there was a specific conference for patient care and services held a couple of months ago. If you are experiencing any problems with your chapter, I would suggest you contact Barb Newhouse directly or send your concern to me and I will try to help.
7. To my fellow ALS warriors - if any of you want to take me to task for any of these views - please DM -me. I work hard everyday advocating for our community. I choose to do it with positivity and productivity. My heart breaks every minute of everyday, and I want nothing more that to get a treatment to my son as quickly as possible. I say let's get on the same page - if there is a vehicle that we can do this - let me know - a conference call, skype etc... but we have a huge voice now - lets use it as productivly as possible and move forward.
Thank you
Nancy Frates
 
Thanks for sharing this Max :)

very interesting reading and so very true
 
This was great. I hope it is spread far and wide!
Doug
 
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