The ALS AssociationCompte verificat

@alsassociation

The ALS Association National Office / Fighting Lou Gehrig's Disease

Washington, D.C.
alsa.org
Unit: febrer de 2009
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  1. fa 9 hores

    What a great meeting – we came away with new colleagues and ideas to help ppl living w ! Thank you to our wonderful hosts , & . Looking forward to Glasgow next year!

    1 resposta 5 retuits A 15 els agrada
  2. fa 9 hores

    Congratulations to Bernard Muller from Project MinE - recipient of the Patient Impact Award at ! So inspiring and well deserved!

    3 retuits A 15 els agrada
  3. fa 9 hores

    In the last year, more than 48,000 people viewed, downloaded, or ordered our new educational materials, including the Living with ALS and Families and ALS resource guides and medical information packets.

    3 retuits A 5 els agrada
  4. fa 9 hores

    Whether it’s , gene therapy, or RNA, we’ve made major progress in innovative research in 2017. Find out more about the progress we made this year:

    6 retuits A 9 els agrada
  5. fa 12 hores

    A former Milton Safenowitz postdoctoral fellow Marka van Blitterswijk is looking at people w C9ORF72 mutation to identify new disease pathways which translate into new therapeutic targets. Great work!

    4 retuits A 8 els agrada
  6. fa 12 hores

    Advocates built support for the ALS Disability Insurance Access Act in Congress this year, a key priority to improve access to needed services for people living with .

    6 retuits A 5 els agrada
  7. fa 12 hores

    Great to hear the fast progress out of and its new partnership with Project MinE . Collaborations are key to finding a cure for ! Learn more:

    7 retuits A 16 els agrada
  8. fa 13 hores

    We wrapped up the ALS IMPACT Survey in 2017! With the help of the almost 1,000 responses from our community, we’ll be better able to develop strategies to empower both caregivers and people living with ALS!

    3 retuits A 9 els agrada
  9. fa 13 hores

    The ALS Association and our advocates joined with other leading organizations to protect the rights of people living with who are on Medicaid, ensuring access to care.

    9 retuits A 27 els agrada
  10. 9 des.

    Throughout 2017, we collaborated with 130+ clinical partners, incorporating American Academy of Neurology best practices.

    3 retuits A 10 els agrada
  11. 9 des.

    IMPACT ALS survey results shows that burden of is high – another step closer to establishing the burdens of daily life & identifying unmet medical needs of our community. We are excited to continue these critical studies! More results coming soon.

    3 retuits A 4 els agrada
  12. 9 des.

    Part of ALS PREFER – IMPACT ALS survey - was sent to people w & caregivers to gather data about disease burden, functional outcomes and treatment views. Thrilled to see a great response – 1,534 participants. Thank you to all that took part!

    3 retuits A 8 els agrada
  13. 9 des.

    It is important for ppl w to give input & integrate into drug development process. Together w & collaborators, we are developing ALS PREFER – a research driven platform building robust ALS patient preference studies. Thank u Lucie for presenting today!

    4 retuits A 6 els agrada
  14. 9 des.

    Dr. Bjorn Oskarsson FL, Director of one of our Certified Clinics, is presenting an analysis of studies treating muscle cramps for those living with . So helpful to be as informed as possible.

    1 resposta 5 retuits A 15 els agrada
  15. 9 des.

    After being newly diagnosed w , many people wonder if they can still exercise. A brand new study by funded Dr. Maragakis is showing that you still can exercise safely and tolerably! . Check out our blog for more:

    11 retuits A 11 els agrada
  16. 9 des.

    In 2004 we invested $1.5 million in therapy research. Fast forward to 2017, and we’ve already seen one approved drug & one more treatment drugs in clinical trials.

    6 retuits A 7 els agrada
  17. 9 des.

    Close collaborator, Dr. Kevin Horton & National Registry presents findings about how close ppl living with ALS are to clinics, 1 key to ensuring that all members of the ALS community have access to the care & support they need. Thank u for your hard work!

    2 retuits A 5 els agrada
  18. 9 des.

    Smoking cigarettes is a well-known cause of many health problems. Dr. Peters shows new findings presented at suggesting smoking increases the risk of , too.

    2 respostes 10 retuits A 11 els agrada
  19. 9 des.

    On stage now at Sheila Essey-award winner Adriano Chio presents studies to explore number of events that are necessary to cause neurodegeneration & how genetic mutations impact this number.

    2 retuits A 5 els agrada
  20. 9 des.

    Dr. Michael Benatar , one of our funded researchers, discusses insight into the longitudinal biomarker study of blood and CSF - called NfL- shows possible first biochemical biomarker of pre-symptomatic disease. Very exciting!

    7 retuits A 7 els agrada

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