Restless Legs Syndrome Foundation Blog

Advocacy Action Alert: Sign-On Letter for the Sleep Community

Advocacy is an important part of the RLS Foundation's work to increase awareness and promote RLS research. We ask RLS community members to participate in Advocacy Action Alerts to expand our reach within Congress. If you have any questions, please email adrianna@rls.org.

Background: Congresswoman Zoe Lofgren (D-CA) is leading the annual appropriations sign-on letter for Fiscal Year (FY) 2026, calling for enhanced support for sleep health and medical research activities. The letter encourages further coordination and new initiatives across the Department of Health and Human Services so that ongoing breakthroughs in medical research are connected with earlier diagnosis, better patient care, and enhanced professional education and public awareness.

Why It’s Important: This letter is open for congressional House members. Increased support from House representatives improves the likelihood that sleep-related recommendations will be incorporated into the final appropriations legislation. Your member of Congress will only sign on to the letter if they are asked to do so by you, their constituent.

Request: Please contact the office of your House Representative and ask that they continue to support the sleep, circadian, and sleep disorders medical research and public health priorities by joining the community’s annual appropriations letter.

Steps to Take Action:

*Complete Step 1 as soon as possible, as you will need the contact information before completing the rest

1. Contact our Washington representative, Matt Duquette at duquette@hmcw.org. Matt will provide the contact information of the Health Legislative Assistant in your Representative’s DC office. Provide your home address and zip code so Matt can identify your House Representative’s Health LA.

Email Subject Line: Congressional Sign-On Letter - RLSF

*Please cc: Adrianna Colucci, RLS Foundation Communications Coordinator (adrianna@rls.org)

3. Email the Health Legislative Assistant, when you receive their contact information, using the sample message below. Please copy and paste the message below into an email, as the representatives will need the link to sign-on. Attach the sign-on letter that you downloaded to the email.

**Sample Message**

Dear [Staffer Name],

I am reaching out today as an advocate for the sleep disorders community and as a constituent from [your hometown]. On behalf of local advocates impacted by restless legs syndrome, I hope your office will join the annual appropriations letter in support of timely report language focused on sleep research and public health activities. The FY 2026 letter is attached and you can complete this form via Quill or contact Arlet Abrahamian at Arlet.Abrahamian@mail.house.gov. Thank you for your time and for your consideration of this request. Please sign on by Friday, May 16th.

[Briefly share your personal RLS story in 2-3 sentences.]

Thank you for your time and your consideration of this request. I look forward to hearing from you in this regard.

Sincerely,

[Name]

[Address]

****

*Please Note: The “quill” link in the sample message will only work for congressional offices (individuals and organizations cannot use it to sign the letter). If you copy and paste the message into an email, the link should be included. The link is also embedded in the sign-on letter.

It is important to reach out as soon as possible, to ensure that your congressional offices have time to review and approve the letter. Thank you for your support as an advocate! If you have questions, please email adrianna@rls.org.

Attending My First SLEEP Meeting: My Experience at SLEEP 2024

Yash Malhotra, RLS Foundation 2024 Intern and Founder of Kids Talk Sleep

Yash Malhotra is an RLS Foundation intern for the summer of 2024. He is also one of the founders of Kids Talk Sleep, a 501(c)(3) nonprofit whose mission is to increase awareness about the benefits of sleep for children and to distribute sleep-related items to children facing adversity in St. Louis. The Foundation is excited to have Yash on board!

My first experience at the national SLEEP meeting was memorable. The SLEEP meeting, or the Associated Professional Sleep Societies annual meeting, is a conference that focuses on sleep medicine, sleep health, and sleep and circadian research. The meeting is a joint venture between the American Academy of Sleep Medicine and the Sleep Research Society. It is a gathering of thousands of people from around the world, including sleep medicine physicians, researchers, and other health care professionals. I met with prominent sleep doctors and researchers, attended the plenary sessions, symposiums and discussion groups, visited with researchers at their research poster presentations, and explored the enormous exhibit hall that showcased the latest clinical and consumer technology.

SLEEP included postgraduate courses, networking/social events, lectures, debates, presentations, discussion groups, symposiums, workshops, and more. Researchers of all different experience levels, including students, were able to share their research work through posters and oral presentations. Much of the research presented was brand new, groundbreaking data that has not yet been published, and was fascinating to learn about.

RLS presentations at the SLEEP meeting:

While I was unable to attend all of these myself, there were a variety of sessions focusing on Restless Legs Syndrome including:

● Update and Review on RLS During Pregnancy, RLS in Childhood, RLS in Dementia, and Iron Supplementation in RLS (Postgraduate Course)

● Diagnosis and Management of RLS During Pregnancy and Lactation

● Review and Update on the Diagnosis and Management of RLS in Children

● Innovations in RLS Diagnosis and Management in Older Adults with Dementia

● National RLS Opioid Registry: Four-Year Dose Stability, Efficacy, and Tolerability

● RLS Treatment Reduces Nighttime Agitation and Increases Sleep Duration in Older Adults with Alzheimer’s Disease

One of the most enlightening sessions was the “Future of Families Cohort.” It included newly unpublished data exploring disparities in sleep from adolescence to young adulthood. This study provided insights into how socioeconomic factors influence sleep patterns over time. I learned that black and biracial young adults got less sleep than their white counterparts which was also associated with household income. Thus, there are clear racial disparities in sleep and further research is needed to promote sleep equity. I also learned that underprivileged and underserved adolescents deal with environmental factors such as urban noise and proximity to pollutants. These factors are more prevalent in disadvantaged neighborhoods, further exacerbating sleep disparities.

Another session that I found fascinating was “Helping Elite Athletes Optimize Sleep for Peak Performance.” This session discussed strategies such as sleep banking (accumulating extra sleep a couple of nights before the sports events) which can help athletes maintain peak performance, even if pre-event jitters disrupt their sleep the night before their competition. The sleep experts also discussed the importance of naps for recovery and performance enhancement. I was especially interested in attending this session because my brother, Sanjay, and I have read a lot about the importance of sleep in student athletes. As a founder of Kids Talk Sleep, we have shared this knowledge on our website (www.kidstalksleep.org) and with 4th and 5th grade elementary school students.

Overall, my first experience at the SLEEP Meeting was amazing! Over the course of just four days, I learned so much and met so many new people. I plan on coming back next year as there is so much more to explore. I highly recommend any researchers or students interested in sleep to attend at least once.

Dear Honorable Chairs and Ranking Members:

On behalf of the 63 member organizations of the National Heart, Lung, and Blood Institute (NHLBI) Constituency Group, we support your efforts to finalize a Fiscal Year (FY) 2023 omnibus funding bill and include a robust investment in the National Institutes of Health, including at least $3.946 billion for the NHLBI. A timely FY 2023 appropriation is vital to allow the NHLBI to continue addressing COVID-19 while maintaining progress on mission critical research addressing cardiovascular, respiratory, blood, and sleep related research priorities.

As you know, delays in regular annual appropriations funding make it challenging to launch major initiatives and pursue critical scientific opportunities to prevent and develop new treatments for heart, lung, blood, and sleep diseases and conditions. This tends to impede our rapidly evolving understanding of cardiovascular disease, including heart failure and congenital heart disease, novel therapies under development for lung diseases such as chronic obstructive pulmonary disease (COPD), asthma, and improved treatment of blood disorders such as sickle cell disease and hemophilia.

The best approach to sustaining incremental progress in research and discoveries is effective planning made possible by recurring, timely, and continuous appropriations. This certainty is critical to scientific advancement. Without regular annual appropriations funding, vital basic, clinical, and translational research opportunities to address critical needs related to the long-term impact of COVID-19 across heart, lung, blood, and sleep, including protection of our most vulnerable populations, are compromised, delayed, or potentially curtailed.

Without sustained annual appropriations, NHLBI will not be able to maintain the momentum associated with its spotlight on the disparate effect that COVID-19 and post-acute COVID-19 has had on vulnerable communities, to continue with research efforts aimed at identifying the causes of and contributors to health disparities, and develop more effective approaches to effectively address, reduce, and ultimately eliminate them. The pandemic also has underscored the need for significant investments in understanding, diagnosing, and treating lung disease as well as preserving lung health.

Given that cardiovascular disease is the leading cause of pregnancy-related deaths, NHLBI has also taken a lead role in working with others at NIH to support research to reduce the nation’s alarming rates of maternal mortality and morbidity, especially among women of color. Without sustained and timely annual funding, NHLBI’s programs focused on improving women’s health throughout the lifespan, including initiatives concentrated on maternal health disparities, will not keep pace with this epidemic.

New sleep research that focuses on risk prevention strategies associated with sleep loss such as hypertension, diabetes, cardiovascular disease, and obesity is needed, especially in populations with relevant health disparities. The alarming growth of these comorbid factors since the onset of COVID-19 impact health related quality of life leading to further impacts on mental health, specifically depression, and suicidal ideation.

An FY 2023 appropriation of $3.946 billion for the NHLBI would allow the Institute to enhance current programs and pursue promising basic, translational, clinical, and prevention research to better diagnose, treat, and prevent these diseases.

Please contact Valerie Adelson with the American Thoracic Society at vadelson@thoracic.org or John Laughner with the American Heart Association at John.Laughner@heart.org if you have questions or need additional information. Thank you for your consideration.

Sincerely,

Valerie Adelson
Co-chair
NHLBI Constituency Group

John Laughner
Co-chair
NHLBI Constituency Group