ALS News Today Forums | leander | Activity https://alsnewstoday.com/forums/members/leander/activity/ Activity feed for leander. Sat, 18 Apr 2026 03:06:52 -0500 https://buddypress.org/?v=2.19.0 en-US 30 hourly 2 c0490276add642cd6d462ef9d02a83a1 leander replied to the discussion What advice do you have for pALS applying for Social Security Disability? in the forum Living With ALS https://alsnewstoday.com/forums/forums/topic/what-advice-do-you-have-for-pals-applying-for-social-security-disability/#post-27134 Fri, 17 Apr 2026 20:36:05 -0500 Reply to What advice do you have for pALS applying for Social Security Disability?

Hi Amanda,

I have Medicare and a Humana Medicare advantage policy with $0 monthly premium. It is paying for the Tofersen treatments. I didn’t need any other Medicare supplemental policies.

]]> 8d15e52457d3c4c65eb8bd10e6911bbd leander replied to the discussion Are you getting QALSody treatments? in the forum Familial ALS https://alsnewstoday.com/forums/forums/topic/are-you-getting-qalsody-treatments/#post-27106 Wed, 08 Apr 2026 03:06:05 -0500 Reply to Are you getting QALSody treatments?

The process of applying for disability and Medicare is actually simplified when you have ALS. ALS is one of the conditions in which you are not required to wait several months for benefits. Also, you are automatically qualified for medicare with disability for ALS. Just give Social Security a call.

]]> dbf9091546fe0e8c5f2a2aa5814a28e0 leander replied to the discussion SPG302 EAP from Spinogenix in the forum ALS Progress https://alsnewstoday.com/forums/forums/topic/spg302-eap-from-spinogenix/#post-26985 Thu, 29 Jan 2026 21:02:41 -0600 Reply to SPG302 EAP from Spinogenix

Katy,

Please keep us posted.

]]> 7982fcc6e7b16508254f5c5ace2029e4 leander replied to the discussion Are you getting QALSody treatments? in the forum Familial ALS https://alsnewstoday.com/forums/forums/topic/are-you-getting-qalsody-treatments/#post-26927 Thu, 01 Jan 2026 20:39:22 -0600 Reply to Are you getting QALSody treatments?

I have fALS, SOD1 mutation. I just had my 10th qalsody treatment. I’m hoping to be one of those who experience some improvement.

]]> 43543c60520b69f488831ba9d5a0b368 leander replied to the discussion SPG302 EAP from Spinogenix in the forum ALS Progress https://alsnewstoday.com/forums/forums/topic/spg302-eap-from-spinogenix/#post-26877 Thu, 27 Nov 2025 20:23:29 -0600 Reply to SPG302 EAP from Spinogenix

Here’s an article that I thought was interesting.

Spinogenix’s ALS hopeful to advance to registrational trial – Clinical Trials Arena https://share.google/MDBKmIcCrsfheApkR

share.google

Spinogenix’s ALS hopeful to advance to registrational trial

If Spinogenix's potentially disease-modifying drug, SPG302, were to be approved in ALS, it would join a market fraught with unmet needs.

]]> 866ec68a4e9d96c3c3f650d88a2df159 leander replied to the discussion SPG302 EAP from Spinogenix in the forum ALS Progress https://alsnewstoday.com/forums/forums/topic/spg302-eap-from-spinogenix/#post-26870 Mon, 24 Nov 2025 22:32:14 -0600 Reply to SPG302 EAP from Spinogenix

This is the latest information that I received from Spinogenix. <div>

Hi Leander,

We will share updates as we have them on our website, see link below.

https://www.spinogenix.com/clinical-trials/amyotrophic-lateral-sclerosis-als/

If you are interested in enrolling in the EAP, please send your treating physician and clinic name.

Best,

</div>

spinogenix.com

Spinogenix ALS Clinical Trials

We are currently recruiting for a Phase 1/2 study to evaluate the safety, tolerability, pharmacokinetics and pharmacodynamics of SPG302 in healthy volunteers and ALS participants. The trial is open in Australia and soon to be in the USA.

]]> 09d103ff4a61ea5c014a0e8b9e636825 leander replied to the discussion QALSody Treatment #30 in the forum ALS Progress https://alsnewstoday.com/forums/forums/topic/qalsody-treatment-30/#post-26757 Thu, 25 Sep 2025 19:34:34 -0500 Reply to QALSody Treatment #30

Amanda,

Thanks so much for the update. I’m happy for you. I’m hoping to have similar results. I will have my 8th qalsody treatment next month. I have familial ALS. So far I still have my upper body strength. My issue is with the use of my legs. I’m in a wheelchair. I know that walking again is not going to happen but maybe treatments will one…

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]]> 63b2c43fb060dd16fb77320de956bed6 leander replied to the discussion QALSody/Tofersen update!! Great News from my doctors. in the forum ALS Progress https://alsnewstoday.com/forums/forums/topic/qalsody-tofersen-update-great-news-from-my-doctors/#post-26662 Sun, 10 Aug 2025 20:25:23 -0500 Reply to QALSody/Tofersen update!! Great News from my doctors.

Your information is from February. Do you have a more recent update? You used the word “recovery “. How severe was your progression? Had you lost the ability to walk and regained that ability? How long were you on qalsody treatments before you began to see significant improvement?

]]> 9e41197ee8834d5b31ef11a73e3dfee4 leander replied to the discussion What is on your medical calendar for February? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://alsnewstoday.com/forums/forums/topic/what-is-on-your-medical-calendar-for-february/#post-26296 Tue, 25 Feb 2025 16:27:37 -0600 Reply to What is on your medical calendar for February?

Thanks for providing so much information about your experience. I’m starting Qalsody on 2/28. How long were you receiving treatment before you noticed any improvement?How do you maintain a positive attitude? Before dealing with this I was very independent. Now I’m totally dependent on my family. They’re amazingly supportive but I still…

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]]> 7af23136ce65505a719bdd2f0d2f0582 leander became a registered member https://alsnewstoday.com/forums/activity/p/24644/ Fri, 14 Feb 2025 16:08:38 -0600 1