Our Team

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When I was 8 years old, my mom was diagnosed with Familial Partial Lipodystrophy, Type 2. In the early days of her diagnosis, my mom emerged as a beacon of hope for lipodystrophy patients, co-founding Lipodystrophy United and championing the cause as a global patient advocate. Her path wasn't easy—juggling the tasks of patient advocacy with her own battles against the disease, all while being a single mother. Her dedication was a lesson in resilience and purpose, even though, throughout my childhood and teenage years, I struggled to fully comprehend the gravity of her fight. I couldn’t grasp that ‘hungry’ could mean feeling ‘literally starving,’ and feeling ‘tired’ could mean feeling like she had not slept in days. I mistook her experiences with lipodystrophy symptoms for the ordinary, not understanding that for her, and many others, lipodystrophy patients face a relentless struggle to be seen and heard by friends, family, community members, and clinicians.

After years of invaluable, unpaid, work with the lipodystrophy community, my mom took a significant leap forward in her patient advocacy journey with the Chan Zuckerberg Initiative (CZI) as a program manager for the Rare as One Network. This transition had its own set of consequences for Lipodystrophy United. It became apparent that the fight for awareness, community, and education needed fresh energy. Not yet confident enough to take over my mom’s vision for LU, yet inspired by her persistent spirit, I embarked on my own journey of advocacy, driven by a desire to serve those on the margins of society.

I received my Bachelor in Political Science at Lewis and Clark College in 2023. My college years were filled with passion for community building and amplifying marginalized voices. I took on many leadership roles at my college, finding my unique voice. I worked at an immigration and asylum law firm for a year, assisting asylum seekers on their applications and writing their unique (and traumatic) stories in hopes that the judge would deem it too dangerous to go back to their home countries. Like my mom, I knew advocacy and aiding marginalized communities was my passion. My educational journey at Lewis and Clark College, combined with my advocacy experiences, and a soul-searching expedition across the United States and Europe, crystallized my purpose. I discovered that my heart beats strongest for community and authenticity, fueling my resolve to reignite the mission of Lipodystrophy United.

When I finally shook my teenage resentment, I realized my mom's journey and the misconceptions she faced throughout her whole life. This opened my eyes to the profound misunderstandings surrounding lipodystrophy. From speaking with patients and listening to stories, I have realized that every patient’s experience with lipodystrophy is different. Yet, researchers still have not scratched the surface with well-known symptoms of lipodystrophy including body dysmorphia, depression, fatigue, anxiety, and pain. The long road forward is incredibly motivating to me, as our community has a great opportunity to directly and positively impact the lives of patients with lipodystrophy. 

With a clear vision, I am committed to leveraging our collective strength to foster an inclusive lipodystrophy community. I envision a future where Lipodystrophy United stands at the forefront of hope and knowledge for anyone seeking to build community and understand lipodystrophy in the U.S. Through unity, education, and advocacy, we aim to shorten the diagnostic journey, increase awareness, and foster an environment where every voice is heard, and every story is validated.

My mom's journey is one of hope, resilience, and unwavering determination. With the support of an incredible community and a shared belief in our cause, we stand on the brink of transforming the landscape for those affected by lipodystrophy. Together, we can illuminate the path forward, ensuring a future where knowledge, compassion, and support are within every patient's reach..

My name Sharon Halperin, and I have lipodystrophy.

For the past 12 years, I’ve worked as a cancer researcher, dedicated to bridging the gap between science and patients. I started as a lab technician, eager to learn as much as possible, and quickly became a lab manager for the Oncology Clinical Trials Unit.

Throughout my career, I’ve witnessed incredible scientific breakthroughs, and I’ve been fortunate to be part of them. But I’ve also experienced heartbreak, facing moments when I couldn't help my patients despite my best efforts.

At the same time, I was fighting my own medical battle. Even as a medical professional, I spent 25 years searching for a diagnosis—until finally, just a year and a half ago, I was diagnosed with lipodystrophy.

Becoming involved with Lipodystrophy United, meeting other patients and caregivers, and being part of this incredible community helped me realize my new mission: bridging the gap between lipodystrophy experts and the lipodystrophy community.

Science and medicine are powerful, but connection, understanding, and advocacy are just as vital. I’m honored to be part of this journey. 

In May 2024, I graduated from the University of Miami, Florida, with a degree in psychology and minors in biology and anthropology. I developed a deep passion for public health and patient advocacy throughout my studies. Early on, I realized that patients are often dehumanized and reduced to their diagnoses. Frequently receiving treatment that focuses solely on physical symptoms. This approach often overlooked that they were humans and should be treated as such.

Growing up, one of my closest friends worked for a rare disease foundation after losing a family member to the condition. It wasn’t until years later that I learned several people close to me, including one of my best friends, were also affected by this same “rare” disease.  Through my friends, I came to understand that the lack of awareness surrounding rare diseases often leaves individuals feeling isolated and more “rare” than they truly are. 

Witnessing the positive impact of organizations like Lipodystrophy United, I was excited to have the opportunity to work with them. I am committed to broadening awareness and changing how healthcare views and treats those in the rare disease community.

In 1986, I graduated from the University of Minnesota with a degree in Software Engineering. After about six years in software development, I transitioned to my dad’s business; he owned a body shop in Dolton, IL. Over the years, the business grew from one location to nine. It was a good business with a bunch of great employees. 

My team and I managed the day-to-day operations, while my father handled the marketing and finding new locations.

During that time, I also volunteered as the board president for four years at our local swim club, which had around 170 swimmers. Additionally, I helped with our kids’ baseball, basketball, and soccer teams.

In 2015, the body shop was acquired by an industry consolidator. At that time, we had nine locations and about 110 employees. In 2024, my wife began volunteering at Lipodystrophy United. She mentioned that they were looking for someone with business experience, which led me to get involved and start helping at Lipodystrophy United.

As a mother, a patient, and the co-founder and President of Lipodystrophy United, my journey represents just one among many who live with Lipodystrophy (LD), each story unique in subtype and severity. Following a 37-year diagnostic odyssey, I was finally diagnosed with Familial Partial Lipodystrophy. Despite sensing something was different about my body and experiencing numerous health issues throughout my life, obtaining a diagnosis was a long and challenging process. My journey revealed the root cause behind years of high cholesterol, diabetes, high blood pressure, and relentless hunger beyond what most could comprehend. Living with LD means facing constant judgment and scrutiny due to my visibly distinct appearance. While some may perceive it as a blessing to lack cellulite, the reality is far from glamorous, marked by daily medications, restricted diets, and a myriad of health complications. Despite the outward appearance of health, the progressive nature of LD brings progressive multi-system disease as well as challenges in being taken seriously by others. However, finding a diagnosis has empowered me to advocate for myself and others affected by LD. While treatments and a cure remain elusive, I am grateful to work alongside inspiring patients, doctors, and researchers worldwide, striving to improve outcomes and pave a smoother path for those navigating the complexities of LD. Despite the hardships, I count myself fortunate for the opportunity to make a difference in the lives of others facing similar challenges. 

I became involved with Lipodystrophy United because of my son, Julian, who was diagnosed with lipodystrophy at 21. For the first time, all the unusual medical challenges he had faced since infancy finally made sense. As a retired nurse, I was able to understand the complex medical terminology doctors used, which helped me navigate his diagnosis and care.

Over the years, we have heard it all from doctor the good, the bad, and everything in between. Being a mother to a child with complex medical needs has been challenging, but it has also shaped my perspective as a caregiver and advocate. Now, I bring that experience to LU.

One of the most important lessons I have learned is the power of advocacy. I believe in raising awareness, supporting others, and helping families navigate the complexities of this disease. If sharing my experiences can make someone else’s journey a little easier or lead to a quicker diagnosis, that would mean everything to me.

As a passionate advocate for the lipodystrophy community, I draw from my own experiences to support and empower others. After being diagnosed with a rare form of lipodystrophy, I quickly became involved in patient education, outreach, and community building. My dedication led me to a volunteer role with Lipodystrophy United, where I serve as a Community Support Liaison.

In this role, I connect with patients, facilitate discussions, and help ensure that individuals living with lipodystrophy feel heard, supported, and informed. I actively contribute to foundation initiatives, including patient education, clinical trial awareness, and fostering connections between the community and medical professionals.

Beyond advocacy, I am pursuing a career as a clinician and diabetes educator, with the goal of providing specialized care for individuals with lipodystrophy. I am committed to bridging the gap between patient experience and medical expertise to improve care and advance understanding of this rare condition.