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Heather Maureen

@thatssoheather

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A week later than I intended, but right on time I guess. On October 9th, Heather and I traveled to Phoenix for @hypersomniafoundation #BeyondSleepy Satellite event in Phoenix the following day. . The lineup was as stout as they come for an advocacy conference. Huge credit goes to @ljesteadt, @clairewyldswright, and board chair @myihlife for strategically scheduling their event to complement HCP-focused events. It effectively accomplishes two advocacy goals in one move: 1). Brings top KOLs from across the medical and behavioral sleep world to the event and 2). Brings advocates to the HCPs to mix and mingle. The community of patients, providers, and industry thrive when under one roof. . As for the HCP lineup: Dr. Lynn Marie Trotti, Dr. Logan Schneider (bucket list selfie accomplished), Dr. Michael Thorpy, @dammgoodsleep (repeat and overdue selfie accomplished), the @michaelgrandner, and Dr. Maggie Blattner amongst others. . I’ll post a bit more on my speaking engagement with Hypersomnia Congress on a later post, but as a teaser: my story and delivery elicited an unprompted compliment from Dr. Thorpy. . There was palpable enthusiasm about the orexin agonists coming down the pipeline, but my favorite part of any event is the community. The three women in the first pic are some of my favorite people around. One of my immediate priorities at any conference is my Diana Kimmel hug and this event I had a chance to catch up with @project_sleep great Ana Lara! My posting frequency and selfie skills may wane at times, but my love for advocacy and awareness never stops. I’m still not sure how I’ve missed Lindsay Jesteadt selfies the entire year. . One of my favorite parts of any trip is coming home to Ellie Bee snuggles. . #idiopathichypersomnia #narcolepsy #advocacy #hypersomnia
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This year at #BeyondSleepy, Matt Horsnell and Heather Lill gave a very insightful presentation on communication and intimacy. We appreciate community members sharing what they have learned so that we can seek out partnerships that will be supportive and loving.⁠ ⁠ If you like presentations like this one, join us at the Kimpton Palomar Hotel Phoenix on Saturday, October 10, 2026, from 9:30 - 4:00 p.m. MST for a #BeyondSleepy™ Satellite where we discuss emerging and important topics relevant to the sleep community. ⁠ ⁠ 🔗 REGISTER - https://beyondsleepywebinar.funraise.org/ or click the link in our bio.⁠ ⁠ Registration for in-person attendance is $25 and $5 for each additional family member. With the generous support of our sponsors, virtual registration is free!⁠ ⁠ 🚨ROOM BLOCK CLOSES SEPT 6TH⁠ ⁠ If you are attending in person and planning to stay at the Kimpton Palomar Hotel Phoenix, we have a special rate of $169*/night plus taxes. Reserve a room HERE - https://tinyurl.com/ybptru6u⁠ ⁠ *Please note that the $35 Guest Amenity Fee that is shown in the price will actually be waived, so the price will be $169, not $204 per night. ⁠ ⁠ ⁠ ⁠You can watch the full presentation now on our YouTube channel. ⁠ ⁠ 🔗 - https://www.youtube.com/@HypersomniaFoundation/ or click the link in our bio⁠.⁠ ⁠ ⁠ #intimacy #idiopathichypersomnia #narcolepsy #kls #hypersomnia #hypersomniafoundation
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Happiest of birthdays to my best friend and love of my life @thatssoheather! There were too many adventures, triumphs, and challenges in the past year to cover in a single post. I’ll sprinkle in some highlights, but the one prevailing theme is her contagious passion for nature and whimsy. . This year we shared a Purple Martin invasion, we tackled waterfall hikes that were impossible in prior years, and through it all was snuggles with puppies. The best part…Heather shared her passions and enthusiasm with all of us. . To start the year off, Heather made a bingo card to track and document her goals, but the biggest accomplishments were between the bingo lines. In addition to overcoming grate-steps and staring down dental anxiety thrice there was not one but three separate public speaking presentations! Along the way she encouraged me to focus my “bingo attention” and inspired me with her persistence. . One of the greatest virtues Heather brings to the table is authenticity. She speaks about her fears and punches them in the fucking mouth anyway. That’s bravery. There is no pretense or false bravado. She will tell you it’s hard and shed some tears, yet she stands tall. . Love you Heather! I’m so grateful to hold your hand during the tough times and to be pulled alongside you as you celebrate the beauty of life during the less tough times. I am a better person, a better father, and a better partner because of you. Thanks for setting an example by sharing your life with the four of us.
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Do you want to meet other people with sleep disorders?⁠ ⁠ ☀️ The SUN is calling you and it says to join us in Phoenix, Arizona, for #BeyondSleepy™ Satellite One-Day Conference!⁠ ⁠ Join on Saturday, October 10, 2026, from 9:30 - 4 pm MST for a #BeyondSleepy™ Satellite where we discuss emerging and important topics relevant to the sleep community. ⁠ ⁠ TOPICS OF DISCUSSION:⁠ ⁠ ▪️ Sleep Inertia and Symptom Burden⁠ ⁠ ▪️ CNS Hypersomnias and Cognition⁠ ⁠ ▪️ New Therapies in Hypersomnia: Orexin Agonists⁠ ⁠ ▪️ Obesity, Metabolic Health and Daytime Sleepiness⁠ ⁠ ▪️ AND MORE…⁠ ⁠ Registration for in-person attendance is $25 and $5 for each additional family member. With the generous support of our sponsors, virtual registration is free!⁠ ⁠ 🔗 Register here - https://beyondsleepywebinar.funraise.org/⁠ ⁠ If you are attending in person and planning to stay at the Kimpton Palomar Hotel Phoenix, we have a special rate of $169*/night plus taxes. Reserve a room HERE - https://tinyurl.com/ybptru6u⁠ ⁠ *Please note that the $35 Guest Amenity Fee that is shown in the price will actually be waived, so the price will be $169, not $204 per night. ⁠ ⁠ ⁠ #ih #narcolepsy #kls #idiopathichypersomnia⁠ ⁠
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Can you believe #BeyondSleepy™ was almost a month ago?!?!⁠ ⁠ We just want to take a moment to thank everyone who made #BeyondSleepy™ happen.⁠ ⁠ Thank you to ALL the volunteers, presenters, advocacy organizations, and sponsors for offering your time, expertise, and presence. ⁠ ⁠ Thank you to ALL of YOU, the community. Whether you joined us in person or virtually. Maybe you'll engage with the presentations on YouTube for the first time... thank you! You are the reason why we organize this conference. ⁠ ⁠ Please join us in Phoenix for a one-day conference. Join us on Saturday, October 10, 2026, for a #BeyondSleepy™ Satellite where we discuss emerging and important topics relevant to the sleep community. ⁠ ⁠ Registration for in-person attendance is $25 and $5 for each additional family member. With the generous support of our sponsors, virtual registration is free!⁠ ⁠ Keep your 👀 eyes peeled; the topics of discussion are coming soon! ⁠ ⁠ 🔗 Register here - https://beyondsleepywebinar.funraise.org/ or click the link in our bio⁠
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➡️Swipe to see patient advocacy in action! 🌟 From June 14-17, 2026, Project Sleep team members and advocates gathered in Baltimore, MD for #SLEEP2026 — the premier meeting in sleep medicine and research, hosted by @aasmorg and @researchsleep. 🎤 We presented in sessions, participated in panels, and emphasized the importance of including patient perspectives in every conversation about #sleephealth and #sleepdisorders. 📸 Swipe to see some of our favorite moments at SLEEP, then head to the 🔗 in our bio for the full recap! 🌌 A huge thank you to all of the amazing community members and patient advocates that traveled far and wide to support Project Sleep and its mission. Thank you AASM and Sleep Research Society for encouraging clinicians and researchers to include patient voices and patient advocacy organizations in your major sleep meeting! #SleepResearch #SleepAdvocacy
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“A whole conference about sleep?!?”😴 This may sound odd but I really love the curious questions from folks who are not attending the conference, in the hotel or just walking to and from the convention center. In the past I’ve explained that yes, there are doctors who specialize in sleep medicine. Or that there are nonprofits dedicated to helping people with sleep disorders. So to the Baltimore man who asked, “It’s about lying down and going to sleep??” Yes. It’s that and much, much more. Of course the presentations, industry events, and exhibit hall were great, but the times in between mean so much to me. The walk & talk with friends or chatting with incredible researchers in the lobby—those moments are so special. Narcolepsy was definitely in the spotlight this year, with exciting new treatments (orexin agonists) coming soon. And I’m thrilled to see more patient voices featured in the main sessions. Overall it was an amazing experience and I’m so grateful to be part of this community🩵 #sleep2026
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💙 #Sleep2026 was dreamy! Honored to present in two conference sessions: 1. Patient-reported outcomes in #narcolepsy and 2. #Sleep in the media (the patient advocacy perspective). 🤗 One of the greatest parts of this year’s conference was cheering on other patient advocates in sessions. The inclusion of patient advocacy voices in the main sessions was AWESOME! Thank you @aasmorg & @researchsleep ☀️This year, narcolepsy was the “golden child” of the conference, IMO. The drug developers and industry partners are very active and engaged, it’s a bit overwhelming really, but the excitement of the upcoming orexin agonists making it through clinical trials was palpable. 👋 I enjoyed meeting new sleep friends IRL and soaking in the hugs and laughs with old friends I’ve known for many years. 💕Heading home exhausted yet glowing, bc @project_sleep’s dream continues to grow and strengthen, I’m forever grateful to walk this journey with you all!
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The @hypersomniafoundation #BeyondSleepy Conference is an annual highlight of advocacy. This year was no different! . I had the honor of being included in three sessions, including two with my partner and best friend @thatssoheather. We built off of our relationship presentation last year and focused on intimacy and communication on Saturday, followed by a roundtable with young adults on Monday. . At Project Sleep’s Advocacy Summit in DC last year I had the honor of watching @alwaystaya present. I was blown away by her composure at the podium under that spotlight. When HF reached out about presenting with Taya on Accommodations at BS this year, I jumped at the opportunity. . The HCP presentations were exceptional, and the advocacy presentations exceeded expectations. . Huge shoutout to Dr. Jen Mundt on her award and on joining the board! . #narcolepsy #idiopathichypersomnia #kleinelevinsyndrome
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It’s worth mentioning that I had to miss a session because I had a CPAP nap. Pacing myself as a patient advocate living with #obstructivesleepapnea is vital to making it through massive conferences like SLEEP. Questions? Let me know in comments 👇
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Let’s talk about sleep! Pretty good start so far! So happy to be with friends that I see across zoom screens and text threads to collaborate on ways to help people sleep better. So much joy!!
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Thank you to Heather and Matthew for giving us a peek at their relationship. They bonded over their shared knowledge of narcolepsy type 1 and chronic illness, and work hard every day to balance each other's needs. The struggle is real, but so is their love for each other. 💖⁠ ⁠ Shout out a loved one below!👇
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