Thank you to everyone who supported this petition.  I have submitted it to NIH and hope that our efforts will result in the change we are requesting.

Dear NINDS

Thank you so much for your very extensive and expansive ALS Strategic Plan dated November 16, 2022. We represent a group of ALS individuals and their families and friends, who have personally experienced the devastation of ALS.   We are well aware of the impact ALS has physically, emotionally and psychologically on an entire family. 

We are truly appreciative of the identification of the over-arching priorities in each of the subgroups.  

But we feel that the current proposal does not adequately recognize the need for additional research in ALS pulmonary care. We reach out to you to ask you to consider amending your draft to prioritize funding research designed to optimize respiratory care for prolonging survival and quality of life for ALS individuals and to improve existing collaborations and partnerships between all ALS stakeholders.

As ALS progresses, motor neurons of muscles supporting the respiratory system will be affected, drastically compromising the ability to breathe without the external support of respiratory assistive devices.  Prolonged survival and improved quality of life are dependent on optimized respiratory support; breathing is everything. 

In a Viewpoint article published in JAMA Neurology, August 2021, Dr. John Hansen-Flaschen outlined the practice gap in the management of respiratory care  and the need to improve earlier coordination of care with pulmonary physicians for ALS individuals. Including and expanding collaborations with pulmonologists would greatly enhance quality of life for ALS individuals and families.

Attached please find the JAMA Neurology article and addendum citing several academic articles authored by U.S. pulmonary and sleep physicians on ALS respiratory care.

Thank you for your consideration.

This is an enormous undertaking and we urge you to amend your draft to include funding research for respiratory care  ALS individuals. 

jamaneurology_hansenflaschen_2021_vp_210010_1627505447.51838

PLEASE RESPOND BY DECEMBER 15, 2022