ALS awareness month

The month of May is ALS awareness month! It’s a good time to advocate and to learn more about this disease. But first, we want to share this important call to action:

The FDA is poised to make a decision on AMX0035

In a few weeks, the FDA will decide whether to approve AMX0035 and make this new drug available to patients living with ALS. This is a treatment that has been proven to slow the decline of function and extend life for people with ALS. Unfortunately, approval is not guaranteed.

To add a bit more context about how important (and frustrating) this is: this drug is simply a combination of two readily available components that many neurologists are currently advising ALS patients to add to their care plan. Because it isn’t yet approved by the FDA for this purpose, that means it cannot be prescribed and patients can only access it by paying out of pocket. The ongoing cost to access these compounds and incorporate them into a daily treatment regimen is significant.

While this drug won’t cure ALS, it WILL provide benefits ( = more time, slower progression) for some ALS patients. We need access NOW. Many of the most brilliant and respected folks working towards a cure for ALS are advocating for the approval of this drug.

Join us in sending a clear message to the FDA that they must approve AMX0035. If you have difficulties with the submission form, please let us know so that we can send you the text of the message with an email address to send it to.

A new opportunity to lend my voice

Earlier this month, I was invited to serve on the Marketing and Communications Committee of the ALS Association’s Golden West Chapter. As a member of this sub-committee of the organization’s board of directors, I’ll have opportunities to help leverage the work the ALS Association is already doing in its Marketing and Communications function so that they can maximize the impact of those efforts. The committee also provides guidance and input when there are potential strategy shifts or new directions to talk through.

Learn more about ALS

To learn more about this ALS and other ways that you can help, check out the following sites:

• I AM ALS
• ALS Association
• Team Gleason
• ALS TDI
• Northeast ALS Consortium (NEALS)
• ALS Untangled
• Healey ALS Platform Trial

In our next update, we’ll share a few more ways you can lend your support.