Welcome to the Community Spotlight series! Each quarter, PeDRA will shine a light on a different patient advocacy organization, highlighting the incredible work they do to support patients and families, the important role they play in research.
Hidradenitis Suppurativa (HS) is a devastating inflammatory skin disease that is painful, stigmatizing, and under-researched in the pediatric population. This quarter, PeDRA is shining a light on this often-overlooked disease with HS Connect, a patient advocacy organization committed to promoting research and providing resources to everyone in the HS community. HS Connect offers virtual support groups, works with the medical research community, and promotes HS education and awareness all in the name of fueling research that will lead to better outcomes for those suffering from HS. Follow the link below to watch PeDRA’s Community Spotlight interviews with HS Connect.
Tune in for part two of our Hidradenitis Suppurativa (HS) Community Spotlight with HS Connect. Daughter of HS Connect founder, Brindley Brooks, talks about having HS and growing up with a mom who also shares the same disease. Kaitlynn, 15, discusses the value of open communication between children and parents and the important role patients play in research.
Children’s Skin Disease Foundation – Camp Wonder
Children with skin diseases don’t get to experience childhood in the same way as children without skin diseases. In this Community Spotlight, we sit down with Francesca Tenconi, the founder and executive director of the Children’s Skin Disease Foundation to talk about their program Camp Wonder! Camp Wonder is a place where children get to be kids, without the burden of their disease taking center stage. Camp Wonder’s unique approach allows children to put their childhood first and gives their parents and siblings a much-needed rest from doctor’s appointments, sleepless nights, and all the other burdens that come with skin disease. At Camp Wonder children participate in all of the “normal” camp activities – swimming, arts and crafts, games, dances, and so much more all while under the care of fantastic camp staff and medical professionals. The Childhood Skin Disease Foundation beautifully highlights the number one reason why research is so important – research being done today, provides new therapies in the future and gives children the opportunity to be kids! Watch to learn more about camp and learn how you can get involved! Learn more at www.csdf.org
Part two of our community spotlight tells the story of a shy young woman struggling with atopic dermatitis and her journey to self-confidence through her experiences at Camp Wonder as both a camper and then a counselor. Mikaela, along with her mother Diana discuss how life-changing Camp Wonder has been for them both. Learn all about the Leap of Faith tower, and see firsthand how Camp Wonder changes lives. Learn more at www.csdf.org
International Hyperhidrosis Society
Part two of our Hyperhidrosis Community Spotlight continues with a very special patient family. Dawn Cerrone has hyperhidrosis; she also has two daughters, one with hyperhidrosis and one without. Dawn, Raili, and Stephanie share their stories and talk about what it’s like raising children with hyperhidrosis in a landscape where awareness and treatment are limited. Watch to the very end to hear granddaughter Harley’s unique perspective, as she so poignantly highlights the gaps in hyperhidrosis research. Learn more at sweathelp.org. #nosweat2021
November is Hyperhidrosis awareness month, so we’re shining a light on the International Hyperhidrosis Society. Tune in for a delightful and informative conversation about the burden and stigma surrounding pediatric hyperhidrosis. Executive Director and Founding Member Lisa Pieretti eloquently highlights the gaps in pediatric hyperhidrosis research, and the importance of education and awareness. Throughout the month of November, patients and researchers alike can visit their website, www.sweathelp.org for interactive quizzes, information, and an Ask Me Anything event on November 18. Follow them on Twitter and Instagram @weknowsweat and Facebook @sweatingstopshere.
National Eczema Association
October is National Eczema awareness month, and before it ends, we are shining a light on the National Eczema Association. This incredible organization supports patients, families, and caregivers, through a variety of activities and resources. NEA also supports research through a robust funding program, as well as their own research through surveys and the EczemaWise app. NEA’s Vice President of Scientific and Clinical Affairs, Wendy Smith-Begolka, MBS discusses the research taking place now and how future research will impact patients, families, and caregivers. Watch and learn more.
Eczema’s range in severity means each patient experience is different from the next and no two stories are the same. Young Ella has lived with severe eczema since she was 8 months old. Now, as a 6-year-old in first grade, she’s finally able to experience some relief and feel like a “normal” kid. Ella and her mom, Amy share their story, and how the National Eczema Association helped them navigate this disease and how Ella was finally able to eat ice cream and go to the beach.
Pachyonychia Congenita – PC Project
Pachyonychia Congenita is a rare and extremely painful dermatologic disease. For many patients a clear diagnosis isn’t even made until adulthood. PC Project aims to change that with a patient registry and free genetic testing. Patients and families come to PC Project for support from a community that knows and understands them, but also to advance the science. Due to the success of the international registry, data provided by patients is fueling research at an accelerated pace, and has led to a successful partnership between PC Project and Palvella Therapeutics. June is PC awareness month, and we’re shining a light on the incredible work of PC Project with our first Community Spotlight. Hit play to learn about PC Project through a special interview with Janice Schwartz, PC Project’s Executive Director. You can learn more about PC Project and ways to get involved by visiting www.pachyonychia.org.
June is pachyonychia congenita (PC) awareness month and we’re continuing our Community Spotlight on PC Project with a special mom and daughter interview. Hear from an amazing young woman and her mother as they discuss the realities of PC and illustrate the importance of accelerating PC research.