Lipodystrophy United
LightNews LightNews
banner
lipodystrophyunite.bsky.social
Lipodystrophy United
@lipodystrophyunite.bsky.social
14 followers 10 following 160 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!
Posts Replies Media Videos
lipodystrophyunite.bsky.social
Sharon shares what Voices of LU is all about in our newest reel 🎥💬
If you’re living with FPLD or supporting someone who is, sign up for the FPLD cohort starting tomorrow! us06web.zoom.us/meeting/regi...
February 3, 2026 at 12:01 AM
lipodystrophyunite.bsky.social
High LDL (cholesterol) can be a big issue in lipodystrophy — but there are multiple paths to lowering it.
• Lifestyle foundations
• Statins (and why tolerance varies)
• Non-statin options like ezetimibe, PCSK9 inhibitors, and bempedoic acid
#Lipodystrophy #RareDisease #Cholesterol #LDL
January 29, 2026 at 12:01 AM
lipodystrophyunite.bsky.social
Join Kate and Dr. Oral in Ann Arbor on February 7th! If you’re interested in the dinner and/or the photo session, please let us know here: forms.gle/467jqHP2LhVh...
Graphic flyer with the headline “JOIN US!” above a red calendar-style box showing February 7, 2026. Text inside the calendar reads: “6:30 community dinner, Palm Palace, Ann Arbor, and group photo session!” Bottom text says: “If you’re interested in the dinner and/or the photo session, please let us know with the form in the caption!”
January 26, 2026 at 10:12 PM
lipodystrophyunite.bsky.social
We can't wait to see you! Join our latest Lunch & Learn with Dr. Nivedita Patni: Challenges in Diagnosing Lipodystrophy Syndromes in Children — Saturday, January 24th at 12 PM CST. Register here: us06web.zoom.us/meeting/regi...
Promotional graphic for Lipodystrophy United’s Lunch & Learn. A laptop screen shows the title “Challenges in Diagnosing Lipodystrophy Syndromes in Children” with the speaker name “Dr. Nivedita Patni” and her headshot. A red “JOIN US!” badge appears in the top right. Text at the bottom reads “Saturday, January 24th, 12 PM CST — Register with the link below.”
January 23, 2026 at 12:00 AM
lipodystrophyunite.bsky.social
Join us Saturday, February 7, in Michigan. Participating in the photoshoot is completely optional, and the focus is self-love, empowerment, community, and a chance to spend time together
RSVP: forms.gle/467jqHP2LhVh...
Flyer titled “Upcoming Events” with the date and location “February 7th, Ann Arbor, MI” in red. Two listed items: “TBD — Group photo session (help us get more up to date professional images of our community)” and “6:30 PM — Community dinner at Palm Palace, Ann Arbor.” Bottom text: “Join Kate, Dr. Oral, and her team Friday February 7th! RSVP with the link in the caption.”
January 19, 2026 at 11:30 PM
lipodystrophyunite.bsky.social
✨ Giving Season Grand Total: $40,314 ✨
We are truly grateful for our giving, dedicated community. Because of you, we’ll be able to support a large portion of our community in attending our EL-PFDD meeting with the FDA—and that impact will ripple out in amazing ways for years to come. Thank you!
Lipodystrophy United graphic showing two people smiling and high-fiving in a bright indoor space. Text at top right: “All funds directly to community hotel/travel aid.” Large headline: “WE DID IT!” Body text thanks the community and says the momentum puts LU ahead of the expected budget for EL-PFDD stipends, helping elevate patient voices and accelerate progress for everyone living with lipodystrophy. Bottom banner reads: “Giving Season Donation Total: $40,314.”
January 17, 2026 at 3:01 PM
lipodystrophyunite.bsky.social
Just Worldwide is conducting research to better understand the experiences of those living with FPLD who have/are using GLP-1’s to manage their condition. Monetary compensation will be given. All information will be entirely confidential and anonymous. Please reach out to [email protected]
Blue recruitment graphic from Just Worldwide. Text reads: “Opportunity for individuals in the United States who are diagnosed with Familial Partial Lipodystrophy.” Just Worldwide is conducting research with people with familial partial lipodystrophy who have used or are currently using GLP-1s (e.g., Ozempic, Wegovy, Mounjaro, Zepbound, Saxenda) to manage their condition. Qualified participants will do a 45-minute one-on-one online interview in the next few weeks and receive a $78 honorarium; information is confidential and anonymous. Contact: Nicole@just-worldwide.com (or click the link in the post).
January 13, 2026 at 11:30 PM
lipodystrophyunite.bsky.social
The Lipodystrophy United team hopes you had the best holiday season! Dr. Fourman, one of our newest SAB members, would like to share a few words and remind us of our mission here at LU. Join us in welcoming her!
#lipodystrophy #lipodystrophyunited
December 26, 2025 at 11:01 PM
lipodystrophyunite.bsky.social
This holiday season, Briana reminds us of the importance of spending time with family and friends, and of truly living in the dash. We hope your holidays are filled with warmth and joy.
If you’re able, we invite you to continue supporting our work by donating at www.lipodystrophyunited.org.
A person stands outdoors against a bright sky, wearing a teal top and patterned wrap skirt, looking off into the distance. Overlaid text features a quote by Briana Steiner about living with lipodystrophy and focusing on the space between diagnosis and what comes next. Lipodystrophy United logo appears in the corner.
December 23, 2025 at 11:51 PM
lipodystrophyunite.bsky.social
Our team is incredibly grateful for each and every donation. Your support will directly shape the impact of our EL-PFDD meeting, and we can’t wait to see what we accomplish together. Thank you and happy holidays from all of us at Lipodystrophy United.

#lipodystrophy #lipodystrophyunited
December 19, 2025 at 11:30 PM
lipodystrophyunite.bsky.social
Lori Seida shares how participating in Give an Hour seminars supported her growth, both as a parent and a person. Find her full statement in our upcoming newsletter! We’re grateful to partner in creating spaces where caregivers feel supported, empowered, and never alone.

#lipodystrophy
Graphic from Lipodystrophy United featuring a quote on a light blue sky background. The quote reads: “I’ve learned practical strategies and coping tools that have truly helped me grow, both as a mom and as a person. I’m deeply grateful for the guidance they provide.” The quote is attributed to Lori Seida, an advocate and caregiver, describing her experience with Give an Hour seminars. The Lipodystrophy United logo appears in the top left corner.
December 18, 2025 at 11:30 PM
lipodystrophyunite.bsky.social
We’re excited to share our new Nutrition Guide for Lipodystrophy Syndromes, full guide available now at lipodystrophyunited.org/nutrition-1.
Created to help individuals and families navigate nutrition, offering practical, patient-centered information to support daily health and metabolic care.
December 15, 2025 at 11:30 PM
lipodystrophyunite.bsky.social
Stories like Serj’s are the reason we’re asking our community to continue towards our new goal of $50,000. Your $13 donation helps ensure every story is heard, every voice matters, and no one faces lipodystrophy alone.
giving-tuesday.lipodystrophyunited.org
#Lipodystrophy #LipodystrophyUnited
Photo of Serj, a lipodystrophy patient and advocate, standing outdoors against a stone wall and greenery. He is wearing a denim vest and holding a cane. Text on the image reads: “As I’ve lived with this disease, I’ve learned: my suffering does not define who I am.” The Lipodystrophy United logo appears in the corner.
December 13, 2025 at 11:30 PM
lipodystrophyunite.bsky.social
$13 for 13 Years
This December 13th, we’re celebrating 13 years of Lipodystrophy United by asking our community to donate $13 to help us reach our NEW $50,000 goal. Every dollar helps move our community forward together. giving-tuesday.lipodystrophyunited.org
#LipodystrophyUnited #Lipodystrophy
Promotional graphic from Lipodystrophy United announcing “$13 for 13 Years” on Saturday, December 13, 2025. The image shows people talking together at an indoor event on the left and a red text panel on the right explaining that donations support patient and caregiver travel, accessibility accommodations, guidance for researchers and drug developers, and defining priorities for trials and treatments. A “Donate Now” button appears at the bottom.
December 13, 2025 at 9:25 PM
lipodystrophyunite.bsky.social
Did you know that lipodystrophy affects how the body processes fat and cholesteromaking LDL harder to manage?
Diet is one piece of the puzzle, but personalized medical care is essential#RareDiseaseAwareness #Lipodystrophy #LDL #MetabolicCare #Lipodystrophyunited
December 11, 2025 at 6:00 AM
lipodystrophyunite.bsky.social
Our newest Lunch & Learn is officially live! 🎉
Learn more about the importance of the EL-PFDD meeting and how patient voices shape the future of research and treatment from Kate and Sharon. Watch now on our website under “Lectures”!
#lipodystrophyunited #lipodystrophy
Two people stand smiling on either side of a large screen at a conference booth, pointing to a presentation titled “The Importance of the EL-PFDD Meeting” by Lipodystrophy United. The screen displays the organization’s website and contact email. Conference lighting and booths are visible in the background.
December 9, 2025 at 1:17 AM
lipodystrophyunite.bsky.social
Giving Season begins with moments like this: connection, compassion, and the strength of our lipodystrophy community. ❤️
We’re just $5,000 away from unlocking our $10,000 match.
Giving Tuesday: December 2nd. Let’s reach this goal together!
DONATE HERE: giving-tuesday.lipodystrophyunited.org
A Giving Tuesday graphic featuring a close-up photo of two people embracing warmly at a community event. One person has their arms wrapped tightly around the other, and both appear emotional. The background shows a meeting room with chairs and water bottles on a table. In the top right corner is the Giving Tuesday heart logo. White bold text reads: “Today marks the start of Lipodystrophy United’s Giving Season.” At the bottom, additional text says: “Only $5,000 left to reach our generous $10,000 match! Giving Tuesday, Dec 2 2025.”
December 2, 2025 at 7:13 PM
lipodystrophyunite.bsky.social
Did you know? When it comes to LDL (“bad cholesterol”), there is no one-size-fits-all number for people with lipodystrophy. Always work with a lipodystrophy-experienced clinician to find the LDL range that’s right for you. 💙 #Lipodystrophy #LDL #RareDisease #LipodystrophyUnited
November 27, 2025 at 5:45 AM
lipodystrophyunite.bsky.social
Be a beacon of light for our community! Follow in our Giving Tuesday journey to raise money towards community travel stipends for our EL-PFDD FDA meeting. Donate and learn more at lipodystrophyunited.org/el-pfdd. Light the way to future advancements!
#lipodystrophyunited #GivingTuesday
A Giving Tuesday promotional graphic for Lipodystrophy United. At the top left is the Lipodystrophy United logo, and at the top right is the Giving Tuesday heart logo. Large text reads: “Be a Beacon of LIGHT.” Below it are several photos of Lipodystrophy United community members — a large group standing by the water during Community Day, a group sitting together indoors wearing LU hats, and smaller family photos of individual community members. Bold red text at the bottom says, “DONATE! This Giving Tuesday.” Below that, smaller text reads: “Follow us to hear more about how to donate.”
November 26, 2025 at 12:00 AM
lipodystrophyunite.bsky.social
🎥 Big news for the Lipodystrophy community!
We’re officially hosting our Externally-Led PFDD Meeting with the FDA on September 11th near Washington, D.C. 🇺🇸
#lipodystrophy #lipodystrophyunited #FDA
November 18, 2025 at 12:08 AM
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 [email protected] 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: [email protected] (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