Active Against ALS is a nonprofit whose mission is to raise funds for cure driven research while being Active and creating a compassionate community.
Ann Arbor, MI
Joined October 2012
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Active Against ALS retweeted
In case you missed it we recently launched a groundbreaking, first-of-its-kind study in #ALS:
medresearch.umich.edu/resear…
Active Against ALS retweeted
What an incredible evening! @ActiveALS hosted a screening of the inspiring "Go On, Be Brave."
Here I am with my dear friend and @MichiganRoss Associate Dean Gretchen Spreitzer and the subject of the documentary @AndreaLytlePeet:
Active Against ALS retweeted
BREAKING NEWS: I am freaking out with excitement to share that @noc_film will be streaming on @PrimeVideo May 28th!
Please share the trailer below with everyone so that, together, we can change the world. #ForLoveAndLife #NoOrdinaryCampaign
Active Against ALS retweeted
Today’s @CMSGov final rule prevents health insurers from using delay tactics to deny care, a HUGE win for the #ALS community!
The rule mandates Medicare Advantage plans to respond to urgent prior authorization requests from doctors within 72 hours and standard requests within 7 days.
Learn more about how this helps the ALS community and their families.: bit.ly/long-awaited-win
Active Against ALS retweeted
This week on the @MiSciWriters blog, @iverma119 highlights the work of @EvaFeldmanMDPhD in honor of May as ALS Awareness Month. Read the Scientist Spotlight here: buff.ly/3IONfo7
Active Against ALS retweeted
#ALSAwarenessMonth Fact: ALS is put into two categories based on family history.
Familial ALS occurs in patients with a family history (about 15% of cases) Those patients without a family history are termed as having “sporadic ALS”.
Active Against ALS retweeted
Did you know that certain professions have been found to have increased prevalence or risk of ALS?
Veterans have a higher-than-normal rate of ALS, and last year we found that production occupations have a higher risk of ALS due to exposure to toxins.
#ALSAwarenessMonth
Active Against ALS retweeted
Next fact that people should know about #ALS from my @TheLancet seminar...
In addition to muscle weakness, up to 50% of patients with ALS can also present with changes in cognition and behavior. #ALSAwarenessMonth
ALT Figure 1 C from Eva L Feldman et al, Amyotrophic lateral sclerosis, The Lancet, Volume 400, Issue 10360, 2022, Pages 1363-1380, ISSN 0140-6736, https://doi.org/10.1016/S0140-6736(22)01272-7
Active Against ALS retweeted
Special thanks to Kathy from @ActiveALS for creating this informative display and donating books during #ALSAwarenessMonth. be sure to check it out upstairs the next time you visit the library!
Active Against ALS retweeted
The FDA authorized the first drug, tofersen, for a rare genetic form of ALS on Tuesday, reflecting the agency's push for greater flexibility in approving treatments for patients with devastating illnesses. Biogen will market the drug as Qalsody. nyti.ms/3L1Po06
Active Against ALS retweeted
The U.S. Food and Drug Administration said on Tuesday it had approved Biogen Inc's drug for treating a form of amyotrophic lateral sclerosis (ALS), making it the first available treatment targeting a genetic cause of the disease. reut.rs/3Azvbty
Active Against ALS retweeted
The FDA has approved a new drug to treat a rare form of amyotrophic lateral sclerosis, or ALS.
The drug is expected to help people with a very specific mutation, SOD1, which applies to about 2% of the ALS population. trib.al/f2RjDn8
Active Against ALS retweeted
The family-friendly event will take place in Burns Park. clickondetroit.com/all-about…
Active Against ALS retweeted
Zac Brown Band’s John Driskell Hopkins shares ALS diagnosis. @DoctorDarienMD has what people should know about the signs and symptoms of the disease. gma.abc/2UKP3ch
Active Against ALS retweeted
I didn’t know that ALS could look like my family until it was our family. It took so much from us, but it could never take away his ability to show love to those he cared about.
#ALSLooksLikeMe #alstdi #ALSAwarenessMonth #endals
Active Against ALS retweeted
👏👏👏
The CRU's @KristianaSalmon and @Genge_Angela are working with a group of internationally renowned ALS clinicians to advocate for more widespread genetic testing in ALS. Their position paper was published in @Brain1878 as a Special Commentary. #ALS #GeneChat #RareDisease
Active Against ALS retweeted
Our thanks to Jack's Hardware on Packard in Ann Arbor for partnering with us to raise ALS awareness. Thanks also to our volunteers Michael Meister and Jeff Ross for putting the message on the sign.
#ALSAwarenessMonth
#ALSawareness
#DefeatALS
activeagainstals.org/als-mon…
Active Against ALS retweeted
Today, I signed the Accelerating Access to Critical Therapies for ALS Act. Thanks to a movement led by patients and caregivers and bipartisan members of Congress, we are finally closer than ever to new treatments, and hopefully a cure.
Active Against ALS retweeted
Last week we lost a distinguished scholar: Bob Schoeni. For many who knew and worked with him, he symbolized dedication, resilience, & an unwavering desire to make the world a better place through academic research & human compassion. myumi.ch/PlnAR
Active Against ALS retweeted
Losing Bob to #ALS is a reminder of the legacy he leaves for scholars and in stimulating the fight against ALS. In remembrance you can donate to @ActiveALS or to the Schoeni professorship @umisr
Last week we lost a distinguished scholar: Bob Schoeni. For many who knew and worked with him, he symbolized dedication, resilience, & an unwavering desire to make the world a better place through academic research & human compassion. myumi.ch/PlnAR