• Russ Newton

Follow up failure by a resource to 'help' ALS Patients.

Hi Russ,

I’ve been reviewing the eligibility criteria for all the interventional ALS trials currently enrolling in Wisconsin and Texas and I unfortunately have not been able to find anything yet.

There is one observational ALS study currently enrolling at the Medical College of Wisconsin in Milwaukee that you may be interested in reading more about: Radicava® (Edaravone) Findings in Biomarkers From ALS (REFINE-ALS)

We do always recommend discussing any interest in clinical trials with your neurologist, as they can advise from a clinical point of view and might be familiar with any trials underway in your local area. If you’d like help finding an ALS neurologist or multidisciplinary clinic near you, or patient support services, these links might be useful:

https://www.neals.org/for-people-with-als-caregivers/contact-an-als-specialist/

http://www.alsa.org/community/centers-clinics/

NEALS also has an email list that you are welcome to sign up for, if you are interested. You will receive announcements, trial news, information about webinars and more as anything new becomes available.

Click this link to sign up: http://visitor.r20.constantcontact.com/manage/optin?v=001bONdtKfWza8MySV0PJmaRnmAeNnHYmm0V6rtvmWslCUfkfHBrv8A3Yg8cVBaLa_MNtpYpUJXn3Ratpg5ToV-iE470txEY2IqPRcnrvSxxOiXWIE9riiNLcFjwkd2Af6e

Please let me know if you have any additional questions that I may be able to help answer.

Sincerely,

Carly

From: rnewt1960 <rnewt1960@gmail.com> Date: Monday, February 14, 2022 at 5:30 PM To: ALS Trials <alstrials@neals.org> Subject: Re: Help!

I am in Wisconsin and I own a home in Texas I can be at if that helps!

Sent from my T-Mobile 5G Device

-------- Original message --------

From: ALS Trials <alstrials@neals.org>

Date: 2/14/22 4:10 PM (GMT-06:00)

To: Russ Newton <rnewt1960@gmail.com>

Subject: Re: Help!

Hi Russ, Can you please tell me what state you’re located in? Thanks, Carly The Northeast ALS Consortium (NEALS) www.neals.org 855-437-4823 From: Russ Newton <rnewt1960@gmail.com> Date: Thursday, February 10, 2022 at 5:51 PM To: ALS Trials <alstrials@neals.org> Subject: Fwd: Help! Can you help me find any ALS trial that doesn't stop me from participating due to the fact I would have to take any medication by peg tube? And I am mute, so email is the best way to communicate for me. I have had bulbar onset ALS since 11/01/19 and keep getting denied because I use a peg tube. Thank you so much. Russ Newton. ---------- Forwarded message --------- From: ALS Problem Solvers <info@alsproblemsolvers.org> Date: Tue, Feb 8, 2022 at 1:11 PM Subject: Re: Help! To: Russ Newton <rnewt1960@gmail.com> Russ, Sorry for the slow response. I've been trying to find someone who knows an easy way to sift through the trial data to look for ones with no feeding tube exclusions, and I've not found anyone. The best advice I can offer are the I AM ALS Dashboard (which does not have a filter for feeding tubes, unfortunately) https://iamals.org/get-help/als-signal-clinical-research-dashboard/ or NEALS, where they have a person who is supposed to help people find trials -- ALS Trial Liaison at (855) 437-4823 or alstrials@neals.org I'm sorry I don't have an easy answer for you. I hope that the NEALS ALS Trial Liaison might be of help. Thanks very much for being interested in a trial! Cathy ALS Problem Solver (who really didn't solve your problem, I'm afraid) ALS Signal - Explore ALS Clinical Research, Trials and Studies - I AM ALS Right to Try (Webinar) This webinar from Northeast ALS Consortium (NEALS) details the history and legal and ethical considerations of Right to Try legislation, which gives terminally ill patients the right to ask companies for access to their investigational drug. iamals.org From: Russ Newton <rnewt1960@gmail.com> Sent: Thursday, February 3, 2022 2:48 PM To: ALS Problem Solvers <info@alsproblemsolvers.org> Subject: Help! I am a bulbar onset ALS victim in my 27 month. I can not longer take anything by mouth and take 100% via a peg port in my stomach. Are there any trials that will accept me with this limitation? Thanks, Russ Newton

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