NAAF’s Industry Partners support NAAF’s mission-driven work and programs, and meet regularly with NAAF leadership to learn about the needs of the AA community and collaborate to achieve common goals.

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Wherever you or your loved one is on their journey with alopecia, we are strongest when we come together as a community to support each other, and to advance research for treatments and ultimately a cure. 2023 is full of achievements all possible thanks to the support of friends like you: the second of two FDA-approved treatments, a revitalized patient conference, a new and improved website at naaf.org, the frequently viewed “You Are Not Alone Education and Empowerment” webinar series, and the inaugural Walk For Alopecia, just to name a few. Please consider a year-end gift to continue this important work. Together, we can empower a better future for all those living with alopecia areata.

Read the rest of this article and the full issue of the November 2023 E-news here>>>

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Media reports of two newly approved drugs for treating alopecia areata brought good news to many people living with the disease. After years of being told there were no treatment options, there’s now hope. However, most news stories about new drugs or indications (uses) usually focus on the researchers and clinical trial results. Rarely do they mention the thousands of clinical trial volunteers — like Maureen McGettigan. Maureen, a 61-year-old from the Philadelphia, PA, area, has lived with alopecia areata since she was 16. Without volunteers like her, there could be no approvals by the U.S. Food & Drug Administration (FDA).

Given how crucial clinical trial volunteers are, how can you or someone you know who has alopecia areata find a study and be part of the very important clinical trial community?

Three stages before drugs are FDA-approved

Maureen, who is also a NAAF board member, encourages people to consider entering a clinical trial if the opportunity arises. She said it took quite a while before there was an alopecia areata drug trial in her area, but when a phase 3 trial became available, she jumped at the chance to participate. “I thought, literally, what do I have to lose? I’d had alopecia areata for such a long time, it’s worth a shot,” she said. “If my hair grows back, that’s fabulous. If not, then I gave it a shot.” If there had been a local phase 2 trial, Maureen said she would have volunteered for that one.

There are three stages of clinical trials before a drug is approved. When one phase is successful, researchers can move on to the next. However, trials can be stopped at any time in any phase if the researchers find dangers to the volunteers or there’s no apparent benefit to the drug. (Information on the differences between the clinical stages follows below the article. In addition, NAAF has a webinar, Patient Guide to Clinical Trials and Drug Development: Phases and Terminology Explained, which goes into more detail.)

Like many clinical trial volunteers, Maureen pointed out that while she hoped she’d benefit from taking the study drug, there was another reason. “The clinical trial is an opportunity to help myself but also to help our community to advance the science,” she explained. She added that having yet one more patient enrolled in the study would help provide more data for the scientists.

Benefits of being a clinical trial volunteer 

In addition to having access to a possibly new medication, clinical trial volunteers have other advantages through their participation, such as having someone keeping a close eye on their health. This includes regular contact with research nurses, along with blood tests and other medical tests, depending on the drug and its potential side effects.

Of course, there may be some disadvantages to participating in a clinical trial as well. If it’s a trial that compares a new drug with a placebo (an inactive medication), there is a chance you may not get the study drug at first. But Maryanne Senna, MD, Director of the Lahey Hair Loss Center of Excellence and Research Unit at Beth Israel Lahey Health and member of NAAF’s Scientific & Medical Advisory Task Force, pointed out that some studies have what is called cross-over portions. “This is where patients who were first randomized to placebo eventually get treated with the active therapy. This is worth asking if you are considering participating in a clinical trial.”

The advantages of regular contact and tests could become a disadvantage if the clinic visits become too frequent or inconvenient for you, though, so you have to consider how much of your time is needed. Finally, you could experience side effects, or the study drug may not work.

In Maureen’s case, although she hasn’t had full hair regrowth since she entered the trial, she said she’s happy anyway. “My lashes and eyebrows have come back!” she explained. “I have more hair than I did two and a half years ago. I’m not wearing my false eyelashes anymore and I can put the makeup on my eyebrows to expand them a little bit.”

But why be in a trial if there already are approved treatments?

Many in the alopecia areata community welcomed the FDA approval for Olumiant and LITFULO over the past year. Still, research continues into pediatric use of these drugs, and other medications. Expanding the number of available treatments is essential because not all drugs work for or are appropriate for everyone.

According to Dr. Senna, response rates, where patients see good results, hover around 40% in most clinical trials when the researchers look at about a year’s worth of data. “This means that many people with alopecia areata still have less than clinically meaningful results. I believe that these first FDA approvals in alopecia areata are the tip of the iceberg,” she said. “As we learn more about alopecia areata and continue to study emerging therapies, we will hopefully increase these response rates and have improved patient outcomes.” In addition, more treatments may become available for children as well.

How to find a trial

If volunteering for an alopecia areata clinical trial interests you, speak with your dermatologist. There may be a trial that is not local but close enough that you’re willing to travel. NAAF has a downloadable worksheet to help you discuss the issue with your doctor and a guide that explains how to use the U.S. government’s clinical trials website.  NAAF also posts information about active alopecia areata clinical trials on its website.

Researchers vet and prepare their clinical trial volunteers carefully because they want the trial to be as fair and accurate as possible – and safe for the volunteers. Before trial admission, the volunteers are carefully screened to ensure they are likely to complete the trial (to minimize drop-outs) and don’t have any health issues that could affect how the study drug works.

Part of the screening looks for inclusion and exclusion criteria. Inclusion criteria may include things like:

• Having the condition the drug is meant for
• Being in a particular demographic or geographic area
• Being in a specific age group

Exclusion criteria can include things like:

• Not being able to give informed consent
• Undergoing treatment for an unrelated disease
• Not being in the trial’s target age group

“Participating in a trial doesn’t hurt and you’re helping the next generation,” Maureen said. There’s the hope that when other 16-year-old girls lose their hair there will be options, and they don’t have to go through all the challenges and the pain and the suffering that that many of us did.”

Dr. Senna agreed. “Some current treatments are less effective for people who have had alopecia areata for a long time. That is understandably disappointing. But it doesn’t always have to be this way,” she says. “Now is our moment!  We are at the tip of the iceberg in understanding this condition and the best treatments for it. As physicians, patients, and advocates, we must keep this wonderful momentum. To continue to move our knowledge forward – and that includes developing treatments for patients who have had the disease for a longer time – clinical trials in alopecia areata are critical.”

Clinical Trial Phases Explained:

Phase 1 is like a fact-finding mission. A small group of up to 100 clinical trial volunteers take the new drug for a few months so researchers can look at the drug’s safety and dose levels. Most often, the volunteers are healthy, although in some cases, they may have the disease or condition the drug is meant to treat. About 70% of these studies move on to phase 2 trials.

Phase 2 trials need volunteers with the disease or condition. The researchers now observe up to several hundred people, how they react to the drug, and whether they have side effects. This phase can last from several months to a couple of years.  Only about one-third of phase 2 trials move on to phase 3.

Phase 3 trials take the longest and need the most volunteers, up to 3000 and sometimes more. This is when researchers are looking more closely at the safety data. Because there are more volunteers and the study goes for an extended period, the researchers may find more uncommon side effects or some that only occur after someone takes the drug for longer. About one-quarter of drugs move on to apply for FDA approval after a phase 3 trial.

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Team Borisoff, the top fundraising team nationwide, officially starts the Walk For Alopecia in San Francisco.

Excitement started building with the nationwide announcement in May to the Walk For Alopecia kickoff at the NAAF Patient Conference in June and throughout the summer. The momentum continued into August with the virtual kickoff and at the special live Instagram rally with Grammy winner Molly Tuttle, to Walk Day with everyone participating across the country while sharing their stories on social media. Every step resulted in empowerment, support, community, hope, fun, and awareness.

Check out our the Walk For Alopecia highlights on YouTube and Instagram. Thank you everyone who had a hand in this inaugural event!

We are already hard at work planning the next Walk For Alopecia in 2024. NAAF was founded more than 40 years ago by volunteers who wanted to do something about alopecia areata. We need your help! Please consider helping to organize the 2024 Walk For Alopecia.

Thank you to the Walk For Alopecia industry partners who not only supported this event with their sponsor dollars, but also raised funds each with their own corporate team:

• National Presenting Sponsor: Pfizer
• Platinum Launch Sponsor: Eli Lilly & Company
• Kickoff Sponsor: Sun Pharma
• Gold Launch Sponsor: Aslan Pharmaceuticals

Walk for Alopecia

Read the rest of this article and the full issue of the October 2023 E-news here>>>

The post Inaugural Walk For Alopecia Ends Awareness Month on a High Note! appeared first on National Alopecia Areata Foundation | NAAF.

We are so excited!  The Walk for Alopecia movement and momentum continues to build. So, we are raising the overall Walk goal one last time to $500,000.  Wowza! Big shout out to Team Sage Wisdom who Walked for Alopecia this past weekend.  We are loving their enthusiasm!

Read the rest of this article and the full issue of the September Enews here>>>

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Read the rest of this article and the full issue of the August Enews here>>>

The post September is Alopecia Areata Awareness Month appeared first on National Alopecia Areata Foundation | NAAF.

At any given time, about 700,000 people in the United States have active alopecia areata (AA), so if you have AA or you care about someone who does, you’re not alone. It might seem like it, but you’re not.

The emotional impact of living with AA can be significant. It can have a negative effect on your quality of life, like making you feel different and self-conscious. Then, this can lead to a domino effect of isolation, depression, or anxiety. If you’re a parent of a child with AA, you might feel guilty, thinking you somehow caused the disease. You might become stressed or anxious if you feel you need to protect your child from negative effects. But it doesn’t have to be that way. There are others who have been where you are now – and they want to help. One place to start is with the NAAF website. There, you can find information on how to find a support group, one-on-one telephone support, and more.

Support comes in different forms

Mention the term “support group” to some people and they imagine a group sitting in a circle in a school gym or church basement, taking turns talking about what is happening to them. Bring up one-on-one support and they may think about a traditional therapist’s office. But help can come in many forms that suit different needs and personalities, especially for children.

For people with AA, support may include:

• Outings so group members get together to not only discuss problems but enjoy planned activities
• Regular group meetings where children play together while their parents talk among themselves or with speakers or facilitators
• Online meetings that take place on a virtual platform, like Zoom
• Formal gatherings, like seminars or conferences
• One-on-one match-ups where the pair can speak on the phone or in person as frequently as they need
• Telephone support with a NAAF volunteer

Emotional support through play and activities

It’s common to feel alone whether you have just developed AA or you’ve been hiding it from others for a while. You  probably don’t know anyone else with the disease. Support groups or one-on-one conversations can offer a safe space to share your feelings and experiences, ask questions, and learn from others who truly know what it is like to live with it.

Young children and teens with AA are learning how to navigate their way in the world, which can be difficult enough for any child. They need to know there are others just like them. Eighteen years ago, Heather Stephen’s daughter, Kenna, lost her hair at the age of two. They lived in Denver, CO, and didn’t know anyone else with the condition and 18 years ago, online searching wasn’t as robust as it is now.

“We were told our child had an autoimmune disease that was incurable,” Heather explains. “And then we walked out of the doctor’s office and we were alone. I remember walking around, looking at kids everywhere we would go, just wanting to find or see a child that looked like mine. It was very lonely and very isolating.” By chance, they ran into someone who was part of a local Denver-area children’s support group, Heather says, and it became a lifeline for their family.

“The leaders were wonderful and it was a chance for us, as parents, to wrap our minds around what the future could look like. To see other families who were ahead in the journey was such a big deal. And to see older kids living really well with the condition, that was a game-changer for us.” Meet-ups were recreational, in parks, for example, not meetings where people sat and talked, Heather points out. This way, the kids had the chance to play with each other and the parents could have side conversations about the topics they were concerned about at the time.

Eventually, Kenna stopped attending that group because her hair grew back, but it fell out again in seventh grade. She then joined another alopecia areata support group, this time one geared towards preteen and teenage girls. “That was a super positive experience,” she says. “I made a lot of good friends, and that’s when, I would say, I really got plugged into the community myself, as opposed to just with my parents.”

Practical support

Aside from the valuable emotional support you can get from a group or one-on-one, there is a lot of important practical support. You can learn from others what they have done for treatments, what worked for them, and what didn’t. Of course, treatment success varies considerably, so their experiences won’t necessarily be yours, but talking about them gives you an idea of what is involved. This can help you come up with questions for your doctor and discuss how to proceed.

Other practical advice can include how to cover your head, where and how to buy a wig if you wish, how to use stylish head coverings, and so much more. Parents can learn how to communicate with school staff and parents of other children who don’t have AA, and even how to deal with bullying if that happens.

Conferences and more formal types of support

NAAF offers people living with AA and their families the opportunity to meet up at national conferences, which take place in different cities each year. Heather found that kind of support invaluable. “ What we found was the Denver-area children’s group was our lifeline here in Colorado, but the next big level of support for us were the NAAF conferences,” she says. “They were incredible experiences. We were able to go with a couple of our other daughters and my mother-in-law. Every time I left a conference, I felt empowered, inspired, and encouraged – better equipped to help Kenna.”  One thing that stood out at the conferences, Heather says, were the activities. For example, if Kenna wanted to swim in the pool at the conference hotel, the pool would be full of kids who all looked like her. “It’s so good to have that representation.”

Support when you least expect to need it

Sometimes, the support comes years after you start connecting with others with AA. “Being a part of a support group isn’t even necessarily the moments when you’re there,” Kenna says. “It’s more like building connections with people who are going through the same thing. So maybe if there’s a moment you feel like you need extra support, or a moment where you do need help or you’re feeling a little bit worse about yourself, you have those people to lean on.” It’s not always just a formal support group setting that’s helpful; it’s building that community that can help you later.

“You don’t always know when you’ll need that help,” Kenna explains. “You might be going along and everything’s going fine. And then somebody says something, or you see something and all of a sudden you think, I need to talk about this to somebody.”

Going a full circle

Remember that “little kids” group that Kenna attended 18 years ago? Now, Kenna’s parents run it. “We want to give back to the community that was there for us the whole time, seeing us through,” Heather explains. As for Kenna, “I think it’s cool for those parents and kids to see somebody like me who’s been through it. I’m functioning and thriving. It’s meaningful for them and it’s super meaningful for me.”

Kenna acts as a mentor now, showing current group members how well she is doing. “I think it’s just cool for those parents and kids to be able to see me, somebody who’s been through it, functioning and thriving. I think it’s meaningful for them and it’s also super meaningful for me.”

To learn about how to access NAAF’s support resources, visit the Get Support page.

The post Seeking Support for Alopecia Areata? NAAF Can Help appeared first on National Alopecia Areata Foundation | NAAF.

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.

Read the rest of this article and the full issue of the June Enews here>>>

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The post FDA Approves LITFULO™ (Ritlecitinib) for Adults and Children ages 12+ with Severe Alopecia Areata appeared first on National Alopecia Areata Foundation | NAAF.

Isoken Igbinedion, Ifueko Igbinedion and Simone Kendle, the founders of Parfait Wigs – a NAAF Conference vendor – appeared on a special segment of The Today Show to discuss how Parfait offers custom wigs innovatively designed with the help of AI. They then surprised Kenna Stephen, who herself has alopecia areata, with a beautiful new wig custom made just for her.  Watch now and feel good all day!

https://www.today.com/video/meet-the-founders-of-a-company-offering-made-to-order-wigs-184316485537

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