On May 1, 2024, a group of 35 U.S. Representatives co-signed a Congressional letter in support of prioritizing sleep medical research and public awareness at a national level. This letter notes the troubling lack of coordinated sleep activities in public health and urges the CDC to modernize sleep public health.
Starting on Thursday, April 11, sleep advocates took action across the country. Over 170 powerful advocates reached over 130 Congressional Offices on Capitol Hill, resulting in 35 co-signers. This is very impressive by Congressional appropriations letter standards. In prior years, we’ve gotten 31 co-signers in 2019, 41 co-signers in 2020, 54 co-signers in 2021, 36 co-signers in 2022, and 33 co-signers in 2023. This continued momentum is critical to advance sleep health, sleep equity, and sleep disorders at a national level.
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So very Thankful, as a woman living with Debilitating Narcolepsy, Epesodic Paralysis episodes lasting up to 3 hrs with Hypnogongic Hallucinations, loss of reality as dream state becomes reality- obstructive sleep Disorder, Loud & clear vocalizing- screaming- while asleep from nightmares. Muscle weakness hits without warning, from deep aching to collapse. Cannot utilize Xyrem for loss of Restorative Rem, D/T Suicidal attempts. “hazy drunk feeling all the following day” stuck with it through vomitting, episodes of delusional state after being titrated though in my own home… Eventually Ended up in ER from complete loss of relatity, ( scary to look back on)… as In ER believed I had died, and was to prove this by showing I could not die, after searching for a scalple to slice wrist while left alone in ER room. I have been to Mayo Clinic, stayed on campus a few weeks soon after unable to utilize Xyrem- nothing as of yet through FDA for this. And though Specialist was helpful in determining my need for higher stimulants than most, and ( over recommended dose) I finally had a couple months of life I thought I lost. Unfortunately since MN, I couldnt receive medical coverage for medications and had to find another ND Sleep Dr. Was with her for years, had other sleep studies performed, as medications seem to lose efficacy quickly. Obstructive Sleep Disorder, Fibromyalgia, worsening depression, agoraphobia ( as of last year or so) Struggle with ongoing health issues stemming from lack of mobility, cognitive function- brain fog, which has impacted my overall life dramatically- loss of 15 yr. Marriage, CNA/MA with Alzheimers patients, Now Adult Children- Estrangement from 2 out of 3, loss of driving leaving me dependent on other means, social life ( have none). Live alone, have become isolated, feel burdensome, and stopped reaching out even in times of desperate need for help- just to bathe. I have been unable ( though have, and still searching for support group, Type of Psychologist who takes into consideration how depression &anxiety are highly compromised with days after being bed ridden and trying to fight- til unable to do very basic daily health needs- eating, water, up to bathroom… There are days even these are not obtainable, seems cycled… 3 days down- 1-2 days okay. Lucky to have a day alert mentally and not having such muscle fatigue/ weakness- but sadly these are the days I’m “catching up” the weeks chores, appts. And then back to complete exhaustion… I am Thankful for all those who are supporting and who care enough to go the extra mile in getting education, awareness, and possibly giving those struggling some hope for a better tomorrow!