Archive for September 7th, 2021

Good afternoon;

Recently I was speaking with a good friend who is on the Board of The Robert Packard Center for ALS Research.   We chatted, as a friend has recently contracted this deadly disease and I wanted to know more about ALS and possible cures.  Our discussion was enlightening and after the call I decided to reach out to my network to solicit your potential support.

Amyotrophic lateral sclerosis (ALS), also known as Lou Gherig’s disease, is a fatal rapidly progressive neurodegenerative disease affecting nerve cells in the brain and spinal cord that control voluntary movements. Eventually, a person with ALS cannot move limbs, eat, speak, or breathe, which ultimately leads to death. Every 4 minutes, someone is diagnosed with ALS and another dies from the disease. The average life span from diagnosis is two to five years and there is no cure. Nearly 9 out of 10 cases of ALS are sporadic (no known family history of the disease) and 1 out of 10 are familial.

The World Health Organization predicts that by 2040, neurodegenerative diseases (including ALS, Alzheimer’s, and Parkinson’s disease) will overtake cancer as the second leading cause of death after cardiovascular disease. This is within our lifetime.

The Robert Packard Center for ALS Research at Johns Hopkins (Packard Center) has been at the forefront of ALS research for 21 years. Its researchers have made contributions to the field of ALS research leading to one of the two current FDA-approved drugs (Riluzole), and significant contributions to the development of two additional drugs currently in clinical trials for the treatment of familial forms of ALS. In addition, any research benefitting studies of other neurodegenerative diseases is shared.

The unique model of the Packard Center:

  • Charges its Scientific Advisory Board with identifying the best and brightest investigators around the world (70% of its researchers are not at Johns Hopkins) conducting the most cutting-edge research that will push the science forward, inviting them to apply
  • Employs a rapid-funding process to support novel ideas and lines of inquiry 
  • Requires its researchers to present their unpublished data at monthly Principal Investigators meetings to receive feedback – challenging, questioning, supporting – from others in the Packard Center cohort. Packard Center researchers collaborate, and share resources and current data.
  • Holds a yearly closed ALS Research Symposium – the premier ALS research event in the world – this year hosting 517 registrants from 7 countries, 23 states, and 115 institutions for 46 speakers and 25 posters over 17 zoom hours 

Another aspect of the Packard Center that is allowing researchers to take the next steps in understanding and treating this dreadful disease is its unprecedented program, Answer ALSAnswer ALS is producing the largest and most comprehensive foundation of integrated ALS data ever amassed and is utilizing big data and artificial intelligence to identify targeted pathways to fight ALS. 

Together, we can make a difference in the fight against ALS and other neurogenerative diseases by supporting Packard Center research. How can you help? Join me in making a contribution. Gifts of any amount make a difference. To provide some guidance:

  • The Packard Center is fully funded through philanthropy
  • Gifts of any size directly support Packard Center research
  • Packard Center researchers are currently funded at $50,000/yr 
  • The Packard Center seeks sponsorships for its Annual ALS Research Symposium 
  • Gifts to the Packard Center endowment help secure a revenue stream for future ALS and neurogenerative research

In addition, you may:

Thank you for your consideration and for your potential support/interest in joining the fight against ALS and other neurodegenerative diseases. For any and all questions (about the science, giving, ways to participate), please contact Meg Whiteford and tell her I sent you:

Meg B. Whiteford, JD

Associate Director of Development

The Robert Packard Center for ALS Research


(410) 955-8684 (office)

(410) 614-0659 (fax)


Make an online gift here 


Steve Gerbsman

Read Full Post »