June e-news No images? Click here FDA Approves New Treatment for Ages 12+ The U.S. Food and Drug Administration (FDA) approved LITFULO™ for severe alopecia areata, marking the second FDA-approved treatment for this disease, and the first approved for children ages 12 and up. “The National Alopecia Areata Foundation is thrilled to have a second FDA-approved treatment for alopecia areata, which is the first approved for adolescents. We continue to see the tangible results of our Treatment Development Program’s early efforts to lay the scientific groundwork for these advances,” said Nicole Friedland, President and CEO of NAAF. “We remain committed to supporting more breakthroughs and empowering our community with more choices.” LITFULO™ (ritlecitinib) belongs to a class of medications known as Janus kinase (JAK) inhibitors. LITFULO™ is approved by the FDA for adults and children 12 and up with severe alopecia areata. LITFULO™, from manufacturer Pfizer Inc., is available by prescription only. Help Make Wigs More Affordable with New Legislation You can help make cranial prosthetics, or wigs, more affordable by asking your congressional representative and senators to co-sponsor new legislation which redesignates wigs as durable medical equipment eligible for Medicare coverage. Learn more at naaf.org. NAAF wishes to thank our congressional champions, Representative Jim McGovern (D-MA) and Senator Richard Blumenthal (D-CT), for being the leads on this effort in the House and Senate, respectfully. NAAF Donors Provide Hope! Emma and Robbie Baker In this summer’s fundraising letter, NAAF VP of Development Robbie Baker shares how his life was forever changed six years ago when his only child, Emma, was diagnosed with alopecia universalis. The help that NAAF provided through the darkest of days provided a beacon of hope to Emma and her family. Emma learned how to live bravely, beautifully and with exceptional strength thanks to the NAAF community. Today, at fourteen the world looks very different for Emma because of the treatments developed by NAAF-affiliated clinicians and researchers, and investments made by NAAF and its donors. NAAF is at an extraordinary moment with increased public awareness of alopecia areata and research driving more and better drug therapies. Just last week, the first ever treatment for kids ages 12 and older was approved by the FDA. This is possible because NAAF drove the science, invested in the research and amplified the voice of the community, thanks to the support of donors. Help NAAF provide hope to others by making a gift today at support.naaf.org/hope. Call for Volunteers for Special Committee In an effort to provide the most up-to-date support information for individuals affected by alopecia areata, we are recruiting volunteers to be a part of a support content committee. This new group will work with NAAF’s Support & Education Director, Judy Williams, to review and revise our current cosmetic guide, and help create a new school support packet. We realize how crucial this information is for individuals with alopecia areata and their families, so we would like to partner with professionals and subject matter experts in these fields: wigs, hair accessories, current make-up trends, counseling, bullying, school advocacy, and classroom accommodations (504 plans). Please contact our Support & Education Director, Judy Williams, at Judy@naaf.org to be a part of this committee. New Webinar: Alopecia Areata 101 NAAF is hosting its next live webinar, Alopecia Areata 101, on Wednesday, July 19th at 7:00pm ET/ 6:00pm CT/ 4:00pm PT. This webinar will be presented by Dr. Amy McMichael, Professor of Dermatology at Wake Forest School of Medicine. What’s the difference between alopecia areata and other types of hair loss? Dr. McMichael will answer some commonly asked questions and provide an overview of alopecia areata and the terms used to describe it. Some myths and facts about alopecia areata will also be covered. This webinar is part of NAAF’s You Are Not Alone, Education and Empowerment Webinar Series, supported by Eli Lilly and Company, Pfizer, and Sun Pharma. Clinical Trial Announcements NAAF works to bring you postings about new clinical trials recruiting individuals living with alopecia areata. To learn more about clinical trials and the latest listings, visit www.naaf.org/studies, and see the announcements below. Clinical Trial Opportunity! What is the BRAVE-AA-PEDS Study? The study is testing how safe and effective a study drug is for children and adolescents with severe AA. During the 36-week treatment period, participants will receive either the study drug or a placebo (a placebo looks like the study drug but does not contain active medicine). Those taking placebo will be offered the study drug in an extension period. To qualify for the BRAVE-AA-PEDS STUDY, participants must:
There are additional qualifications which the study team would like to review with you. If you would like to learn more about this study, click here: https://brave-aa-peds.researchstudytrial.com/?utm_source=patient_advocacy_group&utm_medium=NAAF&utm_campaign=patient_recruitment&r=9 Clinical Trial Opportunity! A clinical research study is looking for adults (18+) diagnosed with alopecia areata with 50% or more scalp hair loss. This study is investigating an oral (taken by mouth) study drug called farudodstat. The main purpose of the study is to see whether farudodstat, when taken twice a day for 12 weeks, can help people with alopecia areata grow hair and to find out if farudodstat is safe when compared to placebo (a pill that looks like the farudodstat tablet but has no drug or other active ingredient in it). Eligible participants will receive study drug for 12 weeks and placebo for 12 weeks. The study will last approximately 8 months and you will have to go to the study center for 11 scheduled visits. Participation in this study is at no cost to you. This study will occur at multiple clinical trial sites throughout the United States. Click here to learn more: https://www.naaf.org/studies/phase-2a-study-to-investigate-farudodstat-in-adults-with-alopecia-areata/ Clinical Trial Opportunity! An ongoing clinical research study is currently recruiting Black and African American patients with alopecia areata for a study that evaluates the safety and effectiveness of an oral drug. Would you like to know more about this study? This study is testing a drug called baricitinib (the “study drug”) in people with alopecia areata. The purpose of the study is to learn how the study drug can help patients, particularly Black and African American patients with alopecia areata regrow their hair .You may qualify to participate in this study if you are 18 to 60 years for males (70 years of age for females), self identify as Black or African American in race, have at least 50% scalp hair loss, and have been diagnosed with alopecia areata for at least 6 months. This study will occur at multiple clinical trial sites throughout the United States. Click here to learn more: https://www.naaf.org/studies/an-open-label-subpopulation-study-to-evaluate-efficacy-and-safety-of-baricitinib-in-participants-with-alopecia-areata-that-self-identify-as-black-or-african-american-in-race/. NAAF Grant Updates NAAF has open opportunities for grants to support research focused on alopecia areata. Visit www.naaf.org/research-grants/ for more information or click a link below. NAAF Research Grants support scientists and clinicians pursuing promising research ideas and innovative projects that will improve understanding of alopecia areata and advance the development or discovery of safe and effective treatments. Applicants may request up to $50,000 for a 1-year award. Application deadline: September 28, 2023. The 2023 Pediatric Alopecia Areata Challenge Grant will award up to $50,000 to stimulate scientists to establish or sustain research programs focused on pediatric AA and advance novel insights into pediatric AA. Investigators with innovative research ideas are encouraged to apply. Application deadline: September 21, 2023. Travel Grants help early career researchers cover the cost of attending a scientific conference or meeting to present research related to alopecia areata. Travel Grants are awarded on a rolling basis. Gary Sherwood |