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Lipodystrophy United
@lipodystrophyunite.bsky.social
13 followers 10 following 140 posts
The ONLY lipodystrophy patient foundation in the United States. We strive to increase understanding of lipodystrophy among the patient community, medical professionals and stakeholders. Follow this account and visit our website to learn more!
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lipodystrophyunite.bsky.social
☕ This Coming Tea with LU: Familial Lipodystrophy Session! 💬
We’re inviting everyone living with familial lipodystrophy to join us on Thursday, November 20th, from 6–7 PM CST for an open, supportive discussion.
👉 RSVP lipodystrophyunited.org/schedule-of-...
A cream and red graphic featuring a vintage teacup and saucer illustration. The text reads: “This coming Tea with LU. Calling all people with Familial Lipodystrophy. Thursday, November 20th, 2025, 6–7 PM CST. Link below.” The bottom includes the Lipodystrophy United logo, email address (info@lipodystrophyunited.org), and website link.
November 14, 2025 at 12:00 AM
lipodystrophyunite.bsky.social
Meet Miranda and Sydney Billington, an inspiring mother and daughter duo taking on FPLD2 together 💪❤️
Have a story to share? We’d love to feature you! Send your story and photo to info@lipodystrophyunited.org and help us continue showing the power of connection
#lipodystrophyunited #lipodystrophy
November 12, 2025 at 12:32 AM
lipodystrophyunite.bsky.social
We’d love to highlight more of the incredible people who make up Lipodystrophy United. If you’d like to be featured on our website or social media, please send us your photos along with a short story about your journey.
📩 Email: info@lipodystrophyunited.org (use/consent forms will be provided)
A promotional graphic from Lipodystrophy United encouraging community members to share photos and stories. The left side shows a family portrait of Miranda, Sydney, and Jeremy Billington standing together in front of a stone wall, smiling. On the top right, a photo of Briana and Emery Steiner shows them standing by the water with a city skyline behind them. Below that, Athena Wendolowski is pictured with her arms raised joyfully near the river. At the bottom, text reads: “Connect with us! Share your stories and images to be featured across LU! Email us at info@lipodystrophyunited.org.
November 8, 2025 at 12:00 AM
lipodystrophyunite.bsky.social
If you missed out, don’t worry!
We’re excited to share our latest session with Dr. Elif Oral:
“Familial Partial Lipodystrophy & Tirzepatide: Clinical Trial Update.”
🎥 Watch now on our website: lipodystrophyunited.org/lectures
#LipodystrophyUnited #Lipodystrophy
A digital flyer from Lipodystrophy United featuring an image of a laptop displaying a photo of Dr. Elif Oral and the text “W/ Dr. Elif Oral — Familial Partial Lipodystrophy & Tirzepatide: Clinical Trial Update.” The banner reads “New Lunch and Learn Available!” and a red button at the bottom says “Now on Our Website.” The Lipodystrophy United logo and contact information (info@lipodystrophyunited.org, lipodystrophyunited.org) appear at the bottom.
November 5, 2025 at 12:00 AM
lipodystrophyunite.bsky.social
Thank you to everyone who made Community Day a fantastic success! Tears were shed, friendships were made, and hope filled the room; we are stronger together! Here are some awesome clips from the day
#lipodystrophy #lipodystrophyunited
November 4, 2025 at 12:31 AM
lipodystrophyunite.bsky.social
☕ This Coming Tea with LU: Partial Lipodystrophy Session! 💬
Join us on Tuesday, November 4th, from 6–7 PM CST for an open, supportive discussion. Come connect, share experiences, and learn from others who understand what you’re going through. 💙
👉 RSVP lipodystrophyunited.org/schedule-of-...
A cream and red graphic featuring a vintage teacup and saucer illustration. The text reads: “This coming Tea with LU. Calling all people with Partial Lipodystrophy. Tuesday, November 4, 2025, 6–7 PM CST. Link below.” The bottom includes the Lipodystrophy United logo, email address (info@lipodystrophyunited.org), and website link.
October 30, 2025 at 10:00 PM
lipodystrophyunite.bsky.social
“High LDL can be part of life with lipodystrophy — but knowledge is power 💪 #Lipodystrophy #RareDisease #Cholesterol #HeartHealth #LDL #LipodystrophyUnited”
October 29, 2025 at 9:02 PM
lipodystrophyunite.bsky.social
Join us on Thursday, October 23rd, from 6–7 PM CST for a welcoming session made for our newest community members! This is a great chance to learn about Lipodystrophy United, meet others in the community, and share your story in a supportive space.
RSVP: lipodystrophyunited.org/schedule-of-...
A cream and red graphic with a sketch of a teacup and saucer. The text reads: “Tomorrow’s Tea with LU — New Member Session! Thursday, October 23, 2025, 6–7 PM CST. Email info@lipodystrophyunited.org with any questions.” The Lipodystrophy United logo appears at the bottom with their website link.
October 22, 2025 at 9:00 PM
lipodystrophyunite.bsky.social
There’s still time to join us in Boston for Community Day!
📅 October 25–26 at The Royal Sonesta, Cambridge
Come connect, learn, and celebrate with the lipodystrophy community.
Register now at forms.gle/WLZ17za8DWKy...
#lipodystrophy #lipodystrophyunited #boston
A flyer for Lipodystrophy United’s Boston Community Day event. The top shows a large photo of smiling attendees from a previous event wearing white hats. The text reads: “Don’t Miss Out. Boston Community Day, October 25th–26th. The Royal Sonesta, Cambridge. 11 AM Saturday, October 25th. Register Now! Link in the Caption.” The flyer includes two smaller photos — one of the Boston Public Garden with people boating on the water, and another showing a group attending a lecture or presentation. The Lipodystrophy United logo appears at the bottom along with the website link: https://lipodystrophyunited.org.
October 13, 2025 at 11:00 PM
lipodystrophyunite.bsky.social
Join us for our next Lunch and Learn with Dr. Oral on Saturday, October 18th, at 12 PM CST!
Topic: Tirzepatide for Lipodystrophy and Other Available Studies 🧪
Don’t miss this chance to learn, ask questions, and connect with the community.
LINK: us06web.zoom.us/meeting/regi...
#lipodystrophyunited
A flyer from Lipodystrophy United promoting a Lunch and Learn event. The title at the top reads: “Lunch and Learn with Dr. Oral.” The topic is “Tirzepatide for Lipodystrophy and Other Available Studies.” Event details: “Saturday, October 18th, 2025, 12 PM CST. Register with the link in the caption.” On the right is a photo of Dr. Oral wearing a green blazer and smiling. At the bottom are contact details: info@lipodystrophyunited.org and https://lipodystrophyunited.org.
October 7, 2025 at 11:00 PM
lipodystrophyunite.bsky.social
☕✨ It’s not too late! Join us for Tea with LU tomorrow, October 7th, at 6 PM CST for an open conversation session led by Kate Stratton.
Don’t miss this chance to connect and share with the community!
➡️ Register: lipodystrophyunited.org/schedule-of-...
A flyer from Lipodystrophy United promoting tomorrow’s Tea with LU. At the top is an illustration of a teacup and saucer with text that reads: “Tomorrow’s Tea with LU.” Below, in a red box, the text says: “It’s not too late! Don’t forget to join us tomorrow, October 7th, at 6 PM CST, for an open conversation session led by Kate Stratton. Register with the link below or on our website under ‘schedule of events’!” At the bottom are the Lipodystrophy United logo, website (lipodystrophyunited.org), and email (info@lipodystrophyunited.org ).
October 6, 2025 at 11:00 PM
lipodystrophyunite.bsky.social
☕ Tea with LU is back! 🎉
Join us for a community-led open session on Tuesday, October 7th at 6 PM CST. This is your space to connect, share, and support one another.
RSVP: lipodystrophyunited.org/schedule-of-...
#lipodystrophy #lipodystrophyunited
A flyer from Lipodystrophy United promoting the return of Tea with LU. The background features a sketch of a teacup and saucer. The main text reads: “This coming Tea with LU – Community Led Open Session. Join us October 7th at 6 PM CST. After a short break, Tea with LU is back! RSVP with the link in the caption.” The bottom includes the Lipodystrophy United logo, website (lipodystrophyunited.org)
October 2, 2025 at 10:01 PM
lipodystrophyunite.bsky.social
Just 26 days left until our Boston Community Day! 🎉 Join us Oct 25–26 at the Royal Sonesta for two days of connection, learning & fun. RSVP now to save your spot! forms.gle/WLZ17za8DWKy...
A flyer from Lipodystrophy United promoting the Boston Community Day Countdown. At the top is a group photo of smiling community members wearing matching hats. Large red numbers “26” are displayed in the center with the text “Days Left Until Community Day.” Below, text reads: “Join us October 25–26 at the Royal Sonesta in Boston! 10 AM Start Time.” At the bottom, bold text says: “RSVP with the link below. *Agenda will be provided upon RSVP.”
September 29, 2025 at 11:00 PM
lipodystrophyunite.bsky.social
💡 Lipid lesson: Cholesterol vs Triglycerides 🧬
Both are fats in your body, but they’re not the same.
👉 Cholesterol = helps build cells & hormones.
👉 Triglycerides = store energy from food.
#Lipodystrophy #LipodystrophyUnited #RareDisease #Triglycerides #Cholesterol
September 24, 2025 at 8:55 PM
lipodystrophyunite.bsky.social
More fun coming to Boston, October 25–26, 2025, for our Lipodystrophy United Community Day! Hear the latest updates in science from Dr. Fourman and her team. Enjoy a private dinner cruise on the Head of the Charles River while chatting with friends.
RSVP: forms.gle/CYVVStDDdpnd...
September 23, 2025 at 11:01 PM
lipodystrophyunite.bsky.social
📺 Missed last week’s Lunch & Learn? No problem!
You can now watch “Know Your Numbers: A Guide to Lipids and Heart Health” with Dr. Fourman anytime on our website. 🩺💙
➡️ Check it out here: lipodystrophyunited.org/lectures
A flyer from Lipodystrophy United announcing that the Lunch and Learn replay is now available. The top text reads: “Watch last week’s special anytime you’d like!” Below, an image of a laptop shows the session title: “Lunch and Learn – Know Your Numbers: A Guide to Lipids and Heart Health” with a photo of Dr. Fourman. A large red button underneath says “Now Available on Our Website.” The footer includes the Lipodystrophy United website (https://lipodystrophyunited.org) and email (info@lipodystrophyunited.org).
September 22, 2025 at 11:00 PM
lipodystrophyunite.bsky.social
Reminder!
We want to hear from you! Whether you’re a patient, caregiver, or family member, your perspective is vital in shaping better resources and support.
👉 US/Canada: herspiegelconsulting.qualtrics.com/jfe/form/SV_...
👉 UK: herspiegelconsulting.qualtrics.com/jfe/form/SV_...
A flyer from Lipodystrophy United reminding the community to take the Mental Health Survey. The top banner reads: “It’s never too late to share your journey.” Below, a red box says “Reminder – Take our Survey!” The main section is titled “Mental Health Survey” with text: “Mental health matters, but too often, the unique challenges faced by people living with lipodystrophy go unheard. This short, anonymous survey is your chance to help change that.” At the bottom, a red banner reads “Link Below!” The footer includes the Lipodystrophy United website (lipodystrophyunited.org) and email (info@lipodystrophyunited.org ). The background image shows a person holding a clipboard and pen.
September 19, 2025 at 11:00 PM
lipodystrophyunite.bsky.social
We're building our Patient Advisory Board, and we want YOU to be part of it! We’re looking for patients, caregivers, and family members to share their perspectives, give feedback, and help shape the future of our programs and research.
APPLY HERE: forms.gle/qaSX6eG6mE2V...
A flyer from Lipodystrophy United with the title “Apply for our Patient Advisory Board.” On the left, text explains that this is an application-based board requiring at least one meeting per month, seeking patients, caregivers, and family members with a range of expertise and experiences. Monetary compensation is provided. The flyer encourages people to join to help influence and shape the patient perspective in the community. On the right, icons highlight key benefits: bringing patient and caregiver perspectives to drive science, sharing feedback on existing programs, and brainstorming new initiatives. At the bottom is a red button that says “Apply with The Link Below!” Contact information is listed: info@lipodystrophyunited.org and https://lipodystrophyunited.org.
September 18, 2025 at 11:00 PM
lipodystrophyunite.bsky.social
🔔 Don’t forget! This Saturday at 12 PM CST, join us for our Lunch & Learn with Dr. Fourman: “Know Your Numbers: A Guide to Lipids and Heart Health.” 🩺💙
You won’t want to miss this chance to learn and ask questions about heart health and lipids!
LINK: lipodystrophyunited.org/schedule-of-...
A reminder graphic from Lipodystrophy United. At the top is the organization’s logo and a headshot of Dr. Fourman. The text reads: “Don’t forget to join us this Saturday for our Lunch and Learn: Know Your Numbers: A guide to Lipids and Heart Health with Dr. Fourman!” A bell icon is placed above the text. At the bottom, a red button says, “Registration Link in Caption!” The footer includes the website (lipodystrophyunited.org) and email (info@lipodystrophyunited.org ).
September 17, 2025 at 11:00 PM
lipodystrophyunite.bsky.social
Reminder! This Thursday, September 18, from 6–7 PM CST, we’re gathering for an important conversation with Julie Wells from Give an Hour.
We’ll focus on the caregiver experience, setting boundaries, finding connection, and building community support.
LINK: giveanhour.qualtrics.com/jfe/form/SV_...
A red and white flyer from Lipodystrophy United and Give an Hour. The top text reads: “Don’t forget to join us this Thursday, September 18! 6–7 PM CST.” Below, in a red box, it says: “You Are Not Alone: Connection, Boundaries, and Caregiver Community: A conversation with Julie Wells from Give an Hour.” The description explains the event will focus on the emotional and psychological toll of caregiving in the rare disease community, highlighting compassionate boundary-setting and realistic approaches to connection and support. A red button in the center reads: “Registration Link in the Caption.” At the bottom are the Lipodystrophy United and Give an Hour websites and contact email.
September 16, 2025 at 11:00 PM
lipodystrophyunite.bsky.social
Welcome Katelyn to our social media team! 🎉 She’s a senior at UCF studying communications, with rare disease close to her heart. We’re so excited to have her join us in amplifying voices and sharing stories from the lipodystrophy community!
#lipodystrophy #lipodystrophyunited
A welcome graphic from Lipodystrophy United with a red and white design. At the top, bold text reads “Welcome to Our Team!” In the center is a circular photo of Katelyn Pitt, who has long dark curly hair and is smiling while sitting in a car. Below, text introduces her as “Katelyn Pitt, Social Media Intern.” The message says, “We are excited to have Katelyn on our team! We are confident that she will be a valuable asset to our brand and we look forward to seeing what she accomplishes in her new role.” At the bottom are the Lipodystrophy United email and website links.
September 12, 2025 at 11:00 PM
lipodystrophyunite.bsky.social
Join us on Thursday, September 18, from 6–7 PM CST for a heartfelt conversation with Julie Wells from Give an Hour. We’ll explore boundaries, connection, and the caregiver community, supporting both caregiver well-being and loved ones.
giveanhour.qualtrics.com/jfe/form/SV_...
A flyer for Lipodystrophy United and Give an Hour’s event titled “You Are Not Alone: Connection, Boundaries, and Caregiver Community” with Julie Wells. The event is scheduled for Thursday, September 18, from 6–7 PM CST. The description explains it will focus on the emotional and psychological toll of caregiving in the rare disease community, exploring compassionate boundary-setting, respectful communication, and realistic approaches to support. A red “Register Now” button is in the center. At the bottom are contact details: info@lipodystrophyunited.org , https://lipodystrophyunited.org , and https://giveanhour.org . A photo of Julie Wells appears on the lower right.
September 10, 2025 at 11:00 PM
lipodystrophyunite.bsky.social
Join us for our next Lunch & Learn on September 20th at 12 PM CST!
Dr. Fourman will guide us through “Know Your Numbers: A Guide to Lipids and Heart Health.” Don’t miss this opportunity to learn and ask your questions—register today!
lipodystrophyunited.org/schedule-of-...
#lipodystrophy
A flyer for Lipodystrophy United’s Lunch and Learn event. The top has the Lipodystrophy United logo. Bold text reads “Lunch and Learn: Know Your Numbers—A Guide to Lipids and Heart Health.” The event details list September 20th at 12 PM CST with a red “Register Below” button. A circular photo of Dr. Fourman is featured in the center. Contact info and website are displayed at the bottom: info@lipodystrophyunited.org and https://lipodystrophyunited.org.
September 9, 2025 at 11:00 PM
lipodystrophyunite.bsky.social
In loving memory of Caroline Williams, a cherished member of our lipodystrophy community. Her strength, warmth, and presence will be deeply missed, but her legacy of love remains with us always ❤️
A memorial graphic with the words “In Loving Memory” at the top. In the center is a photo of Caroline Williams sitting outdoors on a chair, wearing a white sleeveless top and green skirt, with a continuous glucose monitor visible on her arm. At the bottom, text reads “Caroline Williams — A beloved member of our lipodystrophy community who will be missed dearly.” Decorative greenery is placed in the corners.
September 5, 2025 at 11:00 PM
lipodystrophyunite.bsky.social
“I’ll never forget your story.” Rowan McDonnell reflects on his summer with Lipodystrophy United through Notre Dame’s Patient Advocacy Program. From physician to community impact, his journey shows the power of patient voices in advancing the field.
Link: patientadvocacy.nd.edu/news/advocac...
A digital flyer titled “Advocacy in Action: I’ll Never Forget Your Story” featuring Rowan McDonnell’s experience with Lipodystrophy United through the University of Notre Dame’s Patient Advocacy Program. The flyer features a large headline, Rowan’s name, and a photo of him standing at a Lipodystrophy United booth, accompanied by a red tablecloth and educational materials. To the right is a text box describing his summer work and a quote from Rowan: “I hope to see that all areas of medicine, from basic science to pharmaceutical development to treatment and care, continue to implement systems where patient voices are integral and not forgotten.” The flyer includes Lipodystrophy United and Notre Dame logos, website links, and a note directing readers to find the full story via the caption.
September 4, 2025 at 10:00 PM