Newsletter Fall 2016
Welcome to the Lipedema Project, an organization dedicated to the fat disorder lipedema. Our mission is to raise awareness, provide education, support research, and encourage community engagement regarding lipedema. We offer information and support for women who think they may have the disease (lipedema affects women almost exclusively), as well as research and education about lipedema for clinicians who wish to better serve their patients.
Highlights from The Lipedema Project
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Catherine Seo, PhD
CoDirector, The Lipedema Project
Research Associate, Földiklinik
Welcome to the enewsletter of the Lipedema Project, published every month (or so!). Please sign up to be kept up to date with the latest news in the Lipedema Movement.
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Ambassador Spotlight: Katia Page, New Jersey
The Ambassador program grew from women all over the world stepping forward requesting to help spread the word. We are honored to have so many amazing ambassadors working with us to educate the public about lipedema. Each month, we will highlight one ambassador who has done exceptional work. It is the actions of these dedicated individuals that can have such a huge impact.
This month, we have chosen to highlight our New Jersey ambassador, Katia Page. Katia was diagnosed with stage 4 lipo-lymphedema two years ago. Since then, she has been fighting to promote awareness of lipedema so that others don’t have to suffer like she did.
Later this month, Katia will be presented with the Fannie Lou Hamer award for her lipedema advocacy and activism in the community. Katia has given speeches at various churches to educate about lipedema. She has also been sending letters to congressmen and senators to get co-sponsors for the Lymphedema Treatment Act. This federal bill will improve insurance coverage for lymphedema treatment supplies, such as doctor-prescribed compression, that are essential for lymphedema treatment. She has also been working hard to get funding for compression garments and supplies for women who cannot afford them.
Katia plans to hold events on June 11, Lipedema Awareness Day, in her area. She is also in the midst of planning a conference for lipedema in New Jersey. Join us in congratulating Katia on all of her wonderful work in the community!
Featuring Xpandasox with Founder Sharon Thorp
Sharon Thorp, founder of Xpandasox, doesn’t run your typical sock business. Involved in the legwear business for 26 years, Sharon has helped to design and sell a variety of fashionable sock lines. In fact, eight years ago, she founded Passione, a luxury legwear brand for women. As her business grew and changed, Sharon felt that it was time to move in a new direction, to provide something new and different to her customers.
While Passione socks were generally well received, Sharon periodically heard customers lament that these socks were too tight around their calves. It was this nagging complaint that sparked the idea of Xpandasox, unique socks with an expandable panel in the back to accommodate a larger calf size. Sharon quickly had a prototype made and realized that this new design could address her customers’ needs. She secured manufacturing and applied for a patent for Xpandasox. Patent pending status was granted in March 2015, and marketing for the brand commenced in full force. Soon after, Full Figure Fashion Week representatives approached Sharon about featuring her socks. Believing she had found her audience in the plus-size fashion industry, Sharon continued to market in traditional retail channels.
One day Sharon received a phone call from a satisfied customer. This woman explained that her mother, who had lymphedema, had found that Xpandasox were large enough to accommodate her swollen, afflicted limb. Sharon had never heard of lymphedema, but was touched to hear this story. The following week, Sharon received an order for Xpandasox from a company called Lipedema Products. Once again, having never heard of lipedema, Sharon called the company, spoke with the founder, and learned all about the disorder. Suddenly, Sharon had found that Xpandasox could serve an even greater purpose than she had thought. These socks could help women afflicted by lymphedema and lipedema.
Since Sharon has learned how her products can help women with lipedema and lymphedema, she has committed herself to learning more about these disorders and to designing more products to meet this community’s need. Currently, Xpandasox come in two sizes that fit shoe sizes 5-9 or 10-12 and that fit calves up to 24 inches in diameter. Xpandasport athletic socks and unisex crew socks are also available. Sharon hopes to roll out an additional larger size sock to accommodate wider legs, and she plans to soon venture into production of compression garments to work alongside the socks.
For 25% off your purchase, enter coupon code LP25OFF at checkout at Xpandasox.com. This offer is valid through April 25, 2016.
Feel free to contact Sharon at [email protected] for more information about Xpandasox. She would be happy to answer your questions and to hear your feedback and suggestions.
About The Friedman Center
The Friedman Center for Lymphedema Research & Treatment at Northwell Health in New York was founded in 2013. Its focus has been on offering solutions for patients with lymphedema, a debilitating condition that occurs in many patients after cancer treatment.
The Friedman Center’s scope of care now includes treatment for lipedema, a condition that can also result in lymphedema. To that end, the Friedman Center has created the Lipedema Project, a comprehensive program to increase awareness and provide education, research and treatment for lipedema. The Friedman Center is proud to sponsor the lipedema documentary, The Disease They Call FAT, the 1st International Symposium on Lipedema, the Lipedema Think Tank, the Lipedema Solutions Forum for women with lipedema in April 2015 and this online CME eduring materials course for physicians.