ALS News Today Forums

SOD1 mutation: Did you know?

Amanda — Mon, 08 May 2023 13:37:50 +0000

Did you know that 5% to 10% of ALS is associated with a genetic mutation. Did you know that the SOD1 mutation was the first mutation identified and that was in 1993? We now know that there are over 150 different SOD1 mutation variants and each one manifests differently. The variant determines things like progression rate, onset symptoms, and so on.

Do you or your pALS fall into the familial ALS category? Did you have genetic testing done? What do you know about the specific mutation you (your pALS) have?

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Research on treatment of ALS associated with the SOD1 gene mutation

Amanda — Thu, 02 May 2019 09:23:11 +0000

https://www.sciencedaily.com/releases/2019/05/190501161224.htm

I came across this article on Science Daily website. It discusses a possible treatment for people with fALS due to a mutated SOD1 gene. It is similar to an article recently published on the ALS News Today website.

“An early stage trial of an investigational therapy for amyotrophic lateral sclerosis (ALS) suggests that people could tolerate the experimental drug and, in exploratory results, the experimental drug was linked to possible slower progression in people with a genetic form of the disease caused by mutations in a gene called superoxide dismutase 1 (SOD1). The preliminary study released today will be presented at the American Academy of Neurology’s 71st Annual Meeting in Philadelphia, May 4 to 10, 2019.” To read the rest of the article follow the link https://www.sciencedaily.com/releases/2019/05/190501161224.htm

Are there articles that you would like to share on our forum? What direction do you think ALS research should take?

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#AskMeAboutALS

Amanda — Thu, 02 May 2019 04:15:43 +0000

A press release from ALS Therapy Development Institute in Cambridge explains that even with successful public awareness campaigns such as the Ice Bucket Challenge many people are not familiar with ALS or how it impacts patients and their families. The Ice Bucket Challenge was amazing, and generated a lot of money for research and did get people talking about ALS. However, the #AskMeAboutALS event being hosted this month, during ALS Awareness Month, will help bring some attention to ALS, and hopefully get people talking and asking questions. The press release states “The ALS Therapy Development Institute (ALS TDI) is using #AskMeAboutALS to encourage more people to ask questions about ALS, learn about the disease, and understand why finding a cure is so important.” Check out the press release and share your thoughts in the forum. http://www.als.net/askmeaboutals.Are there are anyways that our forum members can help get people talking?

For more information click on the link above or contact The ALS Therapy Development Institute
Meghan Lawlor
617-441-7269

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Research is impacting treatment

Amanda — Sat, 27 Apr 2019 05:56:33 +0000

This study of out Penn State https://alsnewstoday.com/2019/04/26/prognosis-model-predicts-risk-respiratory-insufficiency-death/ may help doctors predict and treat pALS who are likely to start experiencing respiratory difficulties. By using this new prognosis model, doctors may be able to estimate the onset of respiratory insufficiency and use this information to determine treatment, possibly prolonging life. What do you think about this article?

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Are doctors treating or suggesting clinical trials based on genetic mutations associated with ALS?

Amanda — Tue, 23 Apr 2019 15:07:00 +0000

https://alsnewstoday.com/ionis-sod1-rx-biib067/

Qalsody (tofersen) for ALS

For pALS with familial ALS, are your doctors discussing medication, clinical trials or other treatments with you that are specifically linked to the genetic mutation you have? What are they recommending?

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2019 National ALS Advocacy Conference June 9 – 11, 2019 – Washington, D.C.

Amanda — Tue, 23 Apr 2019 01:17:04 +0000

The National ALS Advocacy Conference is right after ALS awareness month. ALS advocates will be in Washington D.C. fighting for better research and support for pALS. Is anyone attending? If so, in what capacity? What changes do you think are needed to better support pALS?

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Wheelchair

Amanda — Sun, 07 Apr 2019 17:17:06 +0000

https://www.youralsguide.com/power-wheelchairs.html

Does anyone have resources they can share that will help ease the expense for devices and equipment? I know the ALS Association has a loan closet. If you know of organizations that help provide walkers, wheelchairs or other devices needed by pALS. Please list links here.

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Advances in research

Amanda — Sun, 07 Apr 2019 03:06:56 +0000

https://alsnewstoday.com/2019/04/05/human-bone-marrow-cells-hold-promise-als-therapy-mouse-study/

Transplanted Human Bone Marrow Cells Hold Promise as ALS Therapy, Mouse Study Shows

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Dogs and ALS

Amanda — Sat, 06 Apr 2019 03:26:14 +0000

I was going through some articles from 2017. I found this one to be interesting. Have you heard about this research? I’ll be looking to see if I can find an update.

Treating Dogs with ALS-like Disease May Lead to Advances in New Therapy for Humans

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No White Flags

Amanda — Wed, 03 Apr 2019 22:41:52 +0000

I moved to New Orleans to be closer to my father when he had ALS. Around the same time Steve Gleason was diagnosed with ALS. Has anyone watched his video diary (movie)? https://www.imdb.com/title/tt4632316/videoplayer/vi122467353?ref_=tt_ov_vi

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