The National Psoriasis Foundation recently launched Our Spot, a companion site for parents, teens and kids with psoriatic disease. I'm so honored and proud to have been part of this project, working along side such great staff and volunteers on the Youth Services Committee. Please read the press release below and visit the website to see what great resources are available. More information and stories will be added, so be sure to check Our Spot often to see the updates.
New Program Offers Resources for Youth and Families Living with Psoriasis and Psoriatic Arthritis
The National Psoriasis Foundation (NPF) has launched Our Spot, a program that provides resources for kids and teens living with psoriasis and psoriatic arthritis. The program includes a website and welcome kit with age-appropriate information and resources to help support the needs of youth living with psoriatic disease -- from toddlers to teens, and their parents and caregivers too. The goal of Our Spot is to improve health outcomes and quality of life for young people managing the physical and emotional aspects of living with psoriatic disease. Arming youth with information, resources and examples of how others like them are living with psoriasis and psoriatic arthritis will help them better understand their diagnosis and foster a more positive outlook about managing their disease. “Our Spot was developed specifically to address the unique needs of youth living with psoriatic disease,” said Jaime Lyn Moy, youth services committee chair and One to One volunteer, National Psoriasis Foundation. “Psoriatic disease can be overwhelming and isolating. We want to provide youth and their families a supportive environment where they can connect with others who know exactly what they are experiencing and learn ways to successfully manage their disease.” Featuring stories from kids, teens and parents about what it means to live with psoriatic disease, the Our Spot website also offers communication tips for both youth and parents in addressing different types of topics -- from knowing how to talk with family and friends about psoriasis and psoriatic arthritis, to addressing bullying and relationships. Our Spot also offers educational materials to help students and school staff understand psoriasis and psoriatic arthritis. There is also an opportunity for parents to connect with other parents raising a child with psoriatic disease through the NPF One to One program. For the first time ever, a welcome kit for newly diagnosed youth is now available. Our Spot welcome kits offer age-appropriate materials for kids age 12 and under, and specific information for teens. Kits include materials about being diagnosed with psoriasis and psoriatic arthritis, a parents’ guide, recipes and snack tips, a symptom tracker journal, a one-year subscription to the NPF Psoriasis Advance magazine, and other items for kids and teens.
In an effort to reduce feelings of isolation many youth with psoriatic disease experience, Our Spot aims to help youth and their families understand that they are not alone and others can help them navigate the challenges that come from living with psoriatic disease. Living with psoriasis and psoriatic arthritis can be an everyday battle. Psoriatic disease affects people differently -- from itching, exhaustion, searing pain and potentially debilitating aches, to the risk of co-morbid conditions, such as cardiovascular disease and diabetes. The best option for people living with psoriatic disease is working with a health care professional to find the appropriate treatment option for managing the disease.
Over the last 50 years, the NPF has become the world’s leading nonprofit patient advocacy organization fighting for individuals with psoriasis and psoriatic arthritis. NPF leads this fight by driving efforts for a cure and improving the lives of the more than 8 million Americans affected by this chronic disease. To date, NPF has funded more than $17 million in research grants and fellowships, and to commemorate 50 years, NPF plans to raise an additional $2 million for early scientific career research programs in 2017 alone. Each year, NPF strives to support, educate and advocate on behalf of more individuals living with or caring for someone with the disease than ever before. As part of that effort, NPF established the Patient Navigation Center to offer personalized assistance to everyone with psoriasis or psoriatic arthritis. Join our community today and help drive discovery and create community for all living with psoriatic disease.
