New Foundation to Help PALS

[Dave K]

Please consider forwarding this post to any attorneys, doctors, OTs, PTs, RTs, or nurses who may be interested in volunteering for a new foundation--the ALS Action Foundation (ALSAF)--whose mission is to conduct research and promote education and awareness concerning the resources available to people with ALS and their families. The foundation is looking for professionals who are willing to volunteer a few hours of research each month.

Why Do We Need A New Foundation When We Already Have The ALS Association?

At this time, ALS has no known cause or cure, and drug development can take over 10 years, which is beyond the average 3-5 year life expectancy of someone diagnosed with ALS. Therefore, the work of the ALS Association (ALSA) to push for development of new treatments will likely not benefit people who are already living with ALS. In the meantime, for people with ALS, their “penicillin” is medical equipment to help them function, and their “vaccine” is the service of other people who are able and willing to provide them with the care they need. Unfortunately, people with ALS too often face daunting challenges getting the care and equipment they need to make the most of their remaining time. That is why the ALS Action Foundation (ALSAF) is being started specifically to benefit people who are already living with ALS, by doing research and promoting education and awareness concerning the resources available to people with ALS and their families. This will be an important supplement to the excellent work of ALSA.

Any professionals interested in learning more about this opportunity to help people with ALS should email David Killoran at [email protected].

 

[chally]

Hey Dave, another foundation that is helpful with resources and tech stuff is the " Gleason " foundation. They were a big help to me. Good day to ya. Chally

 

[Dave K]

One of the goals of the new foundation will be to work with organizations such as Team Gleason and others that are devoted to helping people who have already been diagnosed. However, the overall mission of our new foundation is broader in that we want PALS to be able to have faster and easier access to resources from their private and public health plans--which they have already paid into--before they are forced to resort to charity. We are looking for medical and legal professionals to help research and write "the book" on how PALS can accomplish this.

 

[KimT]

Are you organized as a tax-exempt organization?

 

[Dave K]

Are you organized as a tax-exempt organization?

We are currently in the process of preparing the necessary government filings to be a tax exempt charitable organization. We hope to complete the filings before the end of February, 2017, and it will be a few months before it can be formally approved.

In the meantime, we are putting together groups of professionals to do the necessary legal and medical research. Several attorneys with outstanding credentials have already volunteered from California and New York, and we are also looking for attorneys from the South and everywhere in the middle. Additionally, we hope to find physicians, therapists, and nurses (and would especially love to get the help of board certified rehabilitationists and certified life care planners because of their experience with home care for quadriplegics).

We expect the organization to be formally in place well before the volunteers will be in a position to publish and disseminate the information to the public, which will be done free of charge. Our goal is that this information will assist PALS and everyone who wants to advocate for PALS to have faster and easier access to needed resources.

 

[Dave K]

I have received some questions asking how volunteers can help ALSAF accomplish its mission.

ALSAF will perform its work through the volunteer efforts of lawyers, physicians, nurses, therapists, social workers, and others to compile, organize, and disseminate information (1) about the availability of timely and sufficient provision of medical equipment, home and community access, and qualified care workers, within the multitude of applicable medical, legal, and regulatory frameworks in the US, and (2) about the rights of persons living with ALS to receive this assistance.

ALSAF volunteers will organize the creation of clinical guidelines for providing medical equipment and home care to persons living with ALS, and to promote the observance of these guidelines by the medical and legal establishments.

ALSAF volunteers will provide information to regulators, lawmakers, and courts in order to advance ALSAF's mission.

ALSAF volunteers will publish and disseminate information to the public and to attorneys, social workers, and medical providers who work directly with persons living with ALS.

ALSAF will liaise with other charitable and volunteer organizations that share goals common to ALSAF's mission.

 

[soonerwife]

Dave, I sent your original post to my neurologist and his nurse as well as an RN that volunteers to help PALS and CALS already.

 

[Dave K]

Hi, Folks. I had a nice meeting with executives from the ALSA Golden West Chapter yesterday, and they committed to contacting their team of doctors, nurses, and therapists who might assist with our goal of creating clinical standards for DME and home care. However, they reminded me that ALSA is structured into regional groups, and that we would have to coordinate with the other ALSA chapters in order to achieve the nationwide reach we are hoping for.

Therefore, if you know anyone with the other ALSA chapters, will please have them contact either of these people:

Cherryl Goldstein
VP, Development
The ALS Association Golden West Chapter
P.O. Box 565
Agoura Hills, CA 91376-0565
[email protected]
O: 818-865-8067 x243
F: 818-865-8066

or

David S Killoran
Partner
Squire Patton Boggs (US) LLP
44 Montgomery Street, Suite 400
San Francisco, CA 94104
T +1 415 743 2418
O +1 415 989 5900
F +1 415 989 0932
[email protected]


One of our goals is for ALSAF volunteers to organize the creation of medical clinical guidelines for the timely and sufficient provision of medical equipment, home care, and qualified care workers for persons living with ALS, and to promote the observance of these guidelines by the medical and legal establishments. We need a substantial team of doctors, nurses, and therapists to volunteer for this work. In addition to all of the disciplines found at ALS clinics, we would love to have the help of board certified rehabilitationists and certified life care planners because of their experience and expertise making care plans for quadriplegics.

On a separate note, we have had a pretty good response from attorneys from CA and NY, but we would love to get attorney volunteers from more states, especially Texas and Florida. We need attorneys to help research laws (1) about the availability of timely and sufficient provision of medical equipment, home and community access, and qualified care workers, within the multitude of applicable medical, legal, and regulatory frameworks in the US, and (2) about the rights of persons living with ALS to receive this assistance. Once complete, we will publish and disseminate information to the public and to attorneys, social workers, and medical providers who work directly with persons living with ALS.