If you’ve missed any of the latest news we’ve shared through our social media this month, don’t worry! Get up to date with this edition of “In Case You Missed It!”
- Welcome Claire Crisp and Lindsay Jesteadt to the Hypersomnia Foundation Leadership Team
- Harmony Biosciences awards the Hypersomnia Foundation with a 2022 “Patients at the Heart” grant
- Save the Date for the HF 2023 #BeyondSleepy Conference in Indianapolis
- Congratulations Dr. Margaret Blattner, recipient of the 2022 joint Hypersomnia Foundation and AASM Foundation Strategic Research Grant
- AASM Foundation now accepting Letters of Intent for the 2023 Strategic Grant—Central Disorders of Hypersomnolence Research
- HF signs NORD support letter for the Accelerating Kids’ Access to Health Care Act
- World Narcolepsy Day celebrated to raise awareness on a global scale
Don’t worry if you’ve missed anything. We’ve got you covered!
Welcome Claire Crisp and Lindsay Jesteadt to the Hypersomnia Foundation Leadership Team!
The Hypersomnia Foundation is proud to welcome Claire Crisp, MFA, as our new Chief Executive Officer and Lindsay Jesteadt, PhD, as our new Chief Operating Officer.
Meet Chief Executive Officer Claire Crisp, MFA
Claire will be bringing her experience in sleep advocacy leadership to the Hypersomnia Foundation to accelerate outcomes for the sleep health community. Additionally, Claire’s experiences that will benefit the organization moving forward include:
- Strategic patient and family advocate for people with sleep disorders
- Leading KOL (key opinion leader), author of Waking Mathilda, and host of the Narcolepsy 360 podcast
- Caregiver to a teen with T1 narcolepsy
- Chief Experience Officer (CXO) of Sleep Consortium
“I am honored and excited to lead the Hypersomnia Foundation at such a critical time of growth for the organization within the wider patient advocacy and sleep research space,” says Claire.
“As interest in hypersomnias grow, now is the time to add an energetic leader who understands our community. Claire has the vision to grow our advocacy and support efforts at the Hypersomnia Foundation, allowing us to reach more people and increase the quality of life for those with central disorders of hypersomnolence,” says David Burley, Chair, and former CEO at Hypersomnia Foundation.
Read more about Claire HERE.
Meet Chief Operating Officer Lindsay Jesteadt, PhD
Lindsay will be bringing her experience in sleep advocacy to the Hypersomnia Foundation to accelerate outcomes for the sleep health community. Additionally, Lindsay’s experiences that will benefit the organization moving forward include:
- Executive operations experience
- Leadership in sleep and education research
- Caregiver to a son with T1 narcolepsy
- CEO of Sleep Consortium
- Program Coordinator for the World Sleep Society
“I am delighted to join the Hypersomnia Foundation as COO and bring my passion and skills to improving the lives of all those with sleep disorders,” says Lindsay.
“We are elated to find a COO with the leadership and operational acumen that Lindsay has. The Hypersomnia Foundation looks forward to accelerating our mission with her exceptional background and knowledge of hypersomnias,” says David Burley, Board Chair at the Hypersomnia Foundation.
Read more about Linsday HERE.
Join us in welcoming Claire and Lindsay to the HF family!
Harmony Biosciences awards the Hypersomnia Foundation with a 2022 “Patients at the Heart” grant
Thank you, Harmony Biosciences, for selecting the Hypersomnia Foundation as a recipient of the 2022 “Patients at the Heart” grant!
We are extremely grateful for the recognition of our work through our #UNITE Beyond Sleepy—An Interactive Forum for Peer-to-Peer Relational Connections program. We established the #UNITE program to foster peer-to-peer support for individuals with hypersomnia disorders to establish meaningful connections and empowerment as they navigate the isolation that often comes with living with an invisible illness.
The Harmony Biosciences’ “Patients at the Heart” program shows their ongoing commitment to support the needs of people affected by rare neurological diseases, including hypersomnias. On September 22, World Narcolepsy Day, Harmony Biosciences announced their 2022 grant recipients. The Hypersomnia Foundation was one of 5 nonprofit organizations selected for our work to support and address the challenges of people living with sleep disorders and rare neurological diseases who experience excessive daytime sleepiness.
Read about the Harmony Biosciences “Patients at the Heart” and “Progress at the Heart” award programs and the 2022 grant recipients HERE.
Save the Date for the HF 2023 #BeyondSleepy Conference in Indianapolis
Mark your calendars and plan on joining us in Indianapolis, Indiana from June 2 – 4, 2023 for the Hypersomnia Foundation’s 2023 #BeyondSleepy Conference! This event is for people with idiopathic hypersomnia, narcolepsy, and Kleine-Levin syndrome and their supporters.
More information will be announced through our social media, but in the meantime, SAVE THE DATE and we’ll see you in 2023 as we get #BeyondSleepy in Indianapolis!
Congratulations Dr. Margaret Blattner, recipient of the 2022 joint Hypersomnia Foundation and AASM Foundation Strategic Research Grant
As leaders in the sleep medicine field, the AASM Foundation and the Hypersomnia Foundation have partnered to provide funding to the Strategic Research Grant program in support of novel hypersomnolence research.
Our congratulations to Margaret Blattner, MD, PhD, for receiving the 2022 joint HF and AASMF Strategic Research Grant for her research, A Novel Protocol for Understanding and Diagnosing Idiopathic Hypersomnia, which recognizes that the current and most common methodology of diagnosing IH, a polysomnogram (PSG) and multiple sleep latency test (MSLT), may have poor sensitivity, specificity, and reliability. Dr. Blattner’s research aims to help address the need for an accurate and reliable diagnostic tool for IH.
“Clinicians and patients have long been aware of the shortcomings of current sleep study protocols for diagnosing hypersomnias,” said Hypersomnia Foundation Board Chair, David Burley. “Dr. Blattner’s research on extended sleep study testing in the home environment will test out protocols for capturing a more accurate picture of a patient’s sleep experience over longer periods of time. Someday, this research may lead to increased accuracy in diagnosis and a greater understanding of the variation of sleep patterns across the hypersomnia spectrum,” said Burley.
“The AASM Foundation is excited about our collaboration with the Hypersomnia Foundation, which represents our inaugural grant funding collaboration with a patient advocacy organization. This grant funding collaboration is a meaningful step towards our vision for all individuals and communities to achieve healthier lives through better sleep,” said AASM Foundation President, Anita Shelgikar, MD, MHPE.
The Strategic Research Grant program supports high-impact, investigator-initiated research projects aimed at providing optimal, cost-effective diagnoses and care for people with sleep disorders. The project chosen to be co-funded by the AASM Foundation and the Hypersomnia Foundation was submitted for a request for applications (RFA) focused on topics that align with both the strategic goals of the AASM and with the research priorities of the Hypersomnia Foundation. Together, the AASM Foundation and Hypersomnia Foundation can positively impact more lives by funding high-impact research, especially for those diagnosed with idiopathic hypersomnia.
For more information about Dr. Blattner’s research and the 2022 Strategic Research Grant, visit the AASM Foundation website HERE.
AASM Foundation now accepting Letters of Intent for the 2023 Strategic Grant: Central Disorders of Hypersomnolence Research
The Strategic Research Grant supports high-impact research projects aimed at improving gaps in knowledge that impact the ability to provide optimal care for people with sleep disorders. This year, in part due to Hypersomnia Foundation’s ongoing collaboration with the AASM Foundation, there is a Strategic Research Grant specifically for Central Disorders of Hypersomnolence Research. We are proud to be partners along with Wake Up Narcolepsy.
The Strategic Research Grant is a 2-step grant process. Applicants must initially submit a letter of intent, which will be reviewed by the AASM Foundation Executive Committee. Applicants will then be notified whether they are invited to submit a full application for further consideration.
Learn more about the AASM Strategic Research Grant HERE.
Letters of Intent are due October 24, 2022. For information on funding, eligibility, research domains, topic areas of interest, and more, visit the AASM website HERE.
HF signs NORD support letter for the Accelerating Kids’ Access to Health Care Act
The Hypersomnia Foundation is pleased to be one of the 110 organizations to write in support of the Accelerating Kids’ Access to Care Act (H.R. 3089/S. 1544). This bipartisan proposal led by Representatives Katherine Clark (D-MA) and Jaime Herrera Beutler (R-WA) and Senators Michael Bennet (D-CO) and Charles Grassley (R-IA) would improve the ability of children with rare diseases to access time-sensitive treatment by reducing unnecessary barriers to care across state lines.
The sign-on letter urges U.S. Congress committee chairs to proceed with legislative hearings and to include this important legislation as part of any year-end package.
For more details, read the complete letter HERE.
World Narcolepsy Day celebrated to raise awareness on a global scale
We were happy to celebrate World Narcolepsy Day on September 22—a day that is dedicated to raising awareness of narcolepsy on a global scale. Established by 24 patient advocacy organizations across 6 continents in 2019, World Narcolepsy Day unites the international narcolepsy community to inspire action, increase public knowledge, and elevate the voices of the 3 million people living with narcolepsy worldwide.
According to the National Institutes of Health, 50 to 70 million Americans have chronic sleep disorders. Thank you, Project Sleep, for spearheading this important day of celebration!