Members Matter Meet Nichole Fest – BCCNS

Patient, Advocate & Fundraiser

Our Transformation from the BCCNS Life Support Network and Vision for the Future

Introducing the BCCNS Alliance

BCCNS Research 101 What’s Happening in the World of Research?

Clinical Trial Updates Learn the Latest News About the Pellepharm Trial

SUMMER 2018

One Regional One-Day Meeting Left in 2018!

Will the BCCNS Alliance be visiting near your hometown?

Update Your Contact Info with the BCCNS Alliance Have you recently moved? Did you get a new e-mail address? Let the BCCNS Alliance know!

Did you know that the BCCNS Alliance has launched a new and much improved website? Our new site will help you navigate the complexities of living with BCCNS. Learn about current research and clinical trials, protocols for diagnosis, a support network to connect with others and volunteer opportunities. Please be sure to visit us at www.bccns.org.

Board of Directors & Medical & Scientific Advisory Board

Board of Directors Julie Breneiser, President

Meredith Weiss, Vice President

Kevin Gullatt, Treasurer

Roni Rubenstein, Secretary

Sam Breneiser

Joyce Rancourt

Michael Rainen

Lisa Tack

Jenni Werkmeister

John Wood

Kathy Rainen (Honorary Board Member)

Medical & Scientific Advisory Board Allan Bale, MD Yale University David Bickers, MD Columbia University Andrzej Dlugosz, MD University of Michigan Ervin Epstein, MD CHORI Jason Givan, MD Ridgeview Dermatology James Hanna, DDS Ashtabula County Medical Center John Hellstein, DDS University of Iowa Joseph Helman, DMD University of Michigan Maulik Shah, MD, PhD Genetic Medicine Clinic James Solomon, MD Ameriderm Jean Tang, MD Stanford University Andrew Walter, MD AI Dupont Hospital

Hello BCCNS Community!There has been a lot going on since I was hired last summer to lead the BCCNS Alliance. We have officially moved our office from Burton, OH to Kulpsville, PA- a small town about 40 minutes outside of Philadelphia. In October, Madeline Miller also joined the staff. We have been busy planning our Regional One-Day meetings, working with volunteers to strengthen our infrastructure and bringing your voice to our pharmaceutical partners.

The biggest change is our new name – the BCCNS Alliance and website, www.bccns.org. Our new name, logo and strategic vision was decided by our board of directors during a weekend retreat in Florida. Our community is so lucky to have these 11 individuals who are dedicated to improving the lives of those with BCCNS. During this meeting, we also decided upon a new mission statement: BCCNS Alliance is to thoughtfully support, comprehensively educate and aggressively seek treatments and a cure for BCCNS, its manifestations and sporadic BCCs.

We’ve also been creating some new resources for you. By now, I hope you’ve had the chance to visit our redesigned website. Check back frequently, as we will be adding more articles and features to help manage and cope and provide timely informational updates about science, research, and clinical trials. We’re also launching the BCCNS Registry in the next few months. By participating in the registry, each one of our BCCNS community members will have the chance to influence and improve medical professionals’ understanding of this rare syndrome. You can learn more about the BCCNS Registry on Page 4.

Please know that Madeline and I are here when you need us! I’ve included my contact information below. E-mail us when you have a question or just to say hello! We look forward to meeting you.

Sincerely,

Jean Pickford jeanp@bccns.org 267-689-6443

Note from Our Executive Director

Are there any family members who would benefit by receiving information from the BCCNS Alliance? Sign them up too!

The BCCNS Alliance has been sending out monthly emails – have you been receiving them?

New Resource Guides. New Opportunities for Connections. News Announcements from the Research Community. It’s too important to miss!

Send your updated contact information to info@bccns.org or visit our website at www.bccns.org and click on the Join Us button at the top.

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by Reid Waldman, MD

BCCNS Research 101

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Researchers have made significant progress identifying new, effective ways to help individuals with Basal Cell Nevus Syndrome (BCCNS). Every day additional studies are ongoing that aim to alleviate the health burden that individuals with BCCNS experience with the hope that one day a cure will be identified. Current clinical research surrounding BCCNS involves three primary areas of interest: 1) Identifying treatments specifically for individuals with BCCNS; 2) Identifying treatments for health problems that commonly affect individuals with BCCNS but that are not specifically designed for those

with BCCNS; and 3) Understanding the health problems that individuals with BCCNS are most at risk for by studying a registry of individuals with BCCNS.

BCCNS occurs due to genetic mutations that cause certain cells in the body to behave differently because these genetic mutations change the way these cells are regulated. This change in regulation occurs because the pathway that controls these cells (termed a ‘cell signaling pathway’) is altered by the genetic mutation that causes BCCNS. The health problems that occur due to BCCNS develop because of one of these genetic mutations. The two most common health problems that occur in individuals with BCCNS are a type of skin cancer called Basal Cell Carcinoma (BCC) and a type of jaw cyst called a Keratocystic Odontogenic Tumor (KCOT).

The treatment of basal cell carcinomas and keratocystic odontogenic tumors in individuals with BCCNS has been dramatically improved since researchers developed medications that act on a ‘cell signaling pathway’ called the Hedgehog Pathway, the same pathway that is altered in individuals with BCCNS. These medications are termed ‘Hedgehog Pathway Inhibitors’ (HHI). The first of these medications, Vismodegib, was initially approved by the Food and Drug Administration (FDA) in 2012. Since that time, another medication, Sonedigib has also been approved by the FDA. Additionally, significant improvements in the way these medications are used to treat complications of BCCNS have occurred.

Currently, one major area of research involving Hedgehog Pathway Inhibitors involves identifying ways to decrease the side effects that individuals taking these medications experience. The reason researchers are so focused on preventing side effects from occurring is because roughly half of all individuals with BCCNS that took a Hedgehog Pathway Inhibitor in an early study of these medications had to stop taking them because they were intolerable. Three examples of ways that researchers are working to combat the side effects of these medications are as follows:

1) Researchers think that the frequency with which these medications are administered may affect the ability of individuals to tolerate these

medications. Researchers are hoping that they can find the best way to dose these medications that will still be very effective but have fewer side effects than current dosing regimens.

2) Researchers are trying to identify ways to prevent side effects from occurring in the first place in individuals on these medications. For example, a recent study suggested that taking L-Carnitine, a molecule that is important for the metabolism of fats in the body, while on a Hedgehog Pathway Inhibitor may prevent the development of muscle cramps, a common side effect of these medications.

3) Researchers are currently studying topical formulations of these medications with the hopes that applying them to the skin, instead of taking a pill, will still be effective. This will avoid the side effects that occur when these medications are given by mouth.

Another major area of research involving Hedgehog Pathway Inhibitors is focused on improving the long-term efficacy of these medications and on decreasing the development of resistance to them. Some basal cell carcinomas are initially very responsive to Hedgehog Pathway Inhibitors but then stop responding to Hedgehog Pathway Inhibitors over time. This is termed ‘drug resistance’ and researchers are actively trying to identify ways to prevent this from happening. Three examples of ways researchers are working to improve the efficacy of Hedgehog Pathway Inhibitors and to decrease resistance to them are as follows:

1) Many researchers now believe that giving these medications intermittently as opposed to continuously decreases resistance rates to these drugs. As previously mentioned, studies are currently ongoing to determine how to best dose these medications.

2) Researchers are studying how combining these medications with other medications that act elsewhere in Hedgehog Pathway effects drug resistance. For example, studies are currently ongoing where one of these Hedgehog Pathway Inhibitors is given in conjunction with Itraconazole, an antifungal agent that also inhibits a different part of this pathway.

3) Researchers are studying combinations of Hedgehog Pathway Inhibitors with other treatments that do not target the Hedgehog Pathway. For example, early research has shown that the combination of a Hedgehog Pathway Inhibitor with Photodynamic Therapy (PDT) may be more effective than either of these treatment options alone.

Another development that shows great promise for helping individuals with BCCNS is the introduction of a larger patient registry of individuals with BCCNS. A patient registry is a database that collects health information about individuals with a specific medical condition. The purpose of a registry is to provide researchers with information about as many patients as possible with a rare condition like BCCNS so that researchers can better understand how the condition effects individuals. A large registry of individuals with BCCNS is set to be launched by the BCCNS Alliance soon and will provide researchers with health information about individuals with BCCNS. (Continued on page 7).

3BCCNS Alliance | www.bccns.org BCCNS Alliance | www.bccns.org

What is a registry? A registry is a collection of standardized information about individuals that is focused around a specific diagnosis or condition. The information is provided on a voluntary basis and you can control who sees your data or not. It’s completely safe and you are de-identified, so there is no need to be concerned that someone can identify you.

Registries can answer gaps in knowledge about a specific condition or disease. A registry may contain personal, medical, social, and financial data. It’s designed to gather insights into the natural history and clinical aspects of a specific diagnosis or condition. Registries can be sponsored by a government agency, nonprofit organization, health care facility, or a private company.

Why should I participate?Have you ever wished for a better treatment for BCCNS? Are you sometimes disappointed with how “slow” the research moves? By participating in the BCCNS Registry, you are helping fuel the research process. Investigators working within BCCNS will now have access to patient data they need to achieve medical breakthroughs. Better treatments are within reach. If you and the BCCNS community participate in the registry, we are one step closer to getting there.

“By participating in the registry, you are acting like a powerful voter! This is your opportunity to educate the world about BCCNS and to make a difference.”

– Jean Tang, MD, PhD, Stanford University

What can I expect when I begin the enrollment process? The BCCNS Registry is broken down into two sections. The first section is an overview and asks general questions about your diagnosis and which manifestations of the syndrome have affected you. This section should only take about 20 minutes to complete. You can stop here, if time is an issue, and come back for the second section. Or you can keep going to completion. The second half is a little more comprehensive and will ask you specific questions about each manifestation and if you’d had medical procedures to treat these symptoms. This part may take you about 40-60 minutes to complete, depending on how involved your treatments and experiences have been. It will be helpful to have your medical records accessible during this time. You can complete the sections at different times and in multiple sittings, if needed. It is important for you to complete all the

sections to allow researchers to have the most comprehensive set of data as possible.

Who will see and/or have access to the information? When you begin to complete the registry questionnaire, you will be prompted to select your privacy and data sharing settings. You have the power to decide whether to share information just with BCCNS Alliance, or whether to share information with researchers, too. You also have the power to decide whether to just share health information, or whether to share you contact information, which would enable you to receive updates about research studies and trials in the future.

Finally, you may also choose to be completely anonymous when you enroll in the Registry. Your contact information would not be shared with the BCCNS Alliance or investigators.

Will the BCCNS Alliance share my contact information with others?No. Our policy states that no contact or participant information be distributed or shared with anyone, under any circumstances, unless permission is granted by the member.

Want more information? Visit the BCCNS Registry Page on our new website, www.bccns.org or contact the BCCNS Alliance at info@bccns.org or 267-689-6443.

INTRODUCING

The BCCNS RegistryThe BCCNS Alliance is poised to launch the new BCCNS Registry this summer. We know that having a disease-specific registry, especially for a rare disease, is a crucial tool for researchers and physicians. That is why the BCCNS Alliance is excited to share the facts about the BCCNS Registry and encourage every patient with BCCNS to enroll in the registry. We need your participation to achieve our goal– providing medical researchers with the information and data they need to find better treatments and one day, a cure for BCCNS.

PellePharm UpdatePellePharm, Inc. (PellePharm), founded by Drs. Phil Beachy, Ervin Epstein, and Jean Tang, is a San Francisco based biopharmaceutical company committed to targeting rare genetic dermatological conditions at the source, including BCCNS (BCNS, Gorlin Syndrome). In late 2017, The U.S. Food And Drug Administration (FDA) granted PellePharm both Breakthrough Therapy Designation and Orphan Drug Designation to patidegib topical gel for reduction of the chronic condition and disease burden of persistently developing basal cell carcinomas (BCCs) in patients with BCCNS.

The FDA granted PellePharm Breakthrough Therapy Designation based on trial results, including a Phase 2 trial assessing the safety and efficacy of patidegib topical gel in patients with BCCNS. Breakthrough Therapy Designation is designed to expedite the development and review of drugs that are intended to treat a serious condition, where preliminary

clinical evidence indicates that the drug may demonstrate substantial improvement over available therapy. For more information on the Phase 2 trial, visit https://clinicaltrials.gov/ct2/show/NCT02762084.

The FDA granted Orphan Drug Designation based on scientific evaluation and the relatively low prevalence of BCCNS. The FDA’s Orphan Drug Designation program is designed to advance the development of drugs for rare diseases that affect fewer than 200,000 people in the U.S. Approximately 10,000 people in the U.S., or one in 31,000, are believed to be affected by BCCNS.

PellePharm plans to initiate a global Phase 3 clinical trial for patidegib topical gel in BCCNS in the summer of 2018. If you are interested in learning more about the upcoming trial, please contact the BCCNS Alliance office at info@bccns.org or 267-689-6443.

BCCNS Alliance | www.bccns.org4

BCCNS Alliance | www.bccns.org 5BCCNS Alliance | www.bccns.org

Sun Safe Clothing Companies

It’s best to schedule outdoor activities to avoid peak sun intensity hours, between 10 AM – 2 PM. This is when the sun’s rays are the strongest and can be the most damaging to the skin.

Always exercise extra caution when you are near water, sand, and even snow, as they reflect and intensify the damaging rays of the sun.

If you or your child are playing sports, be sure to talk to the coach about encouraging sun safe behaviors for the whole team.

Never leave home without a sun protective hat, pair of sunglasses and some extra sunscreen.

If you have a school-aged child, consider asking the school to enhance the playground with some more shaded areas (shade trees, shade structures, temporary shade structures for sport fields). This could even be a service project funded by a school’s PTO organization. TIP: The AAD also runs a Shade Structure Program, which awards funds to schools, day-cares, parks, and other non-profit organizations for installing permanent shade structures where children learn and play. For more information, contact shadestructure@aad.org.

Staying Safe in the Sun This Summer Summer and warmer weather is right around the corner. For most BCCNS members, it means an annual summer vacation or the start of a summer sports league. Although wearing sunscreen and sun protective clothing is a normal part of your daily life, it’s important to take extra protective measures throughout the summer months.

Here are some reminders and tips to help you enjoy your summer, but in a safe and cautious manner. Thanks to the American Academy of Dermatology & their SPOT Skin Cancer initiative, the BCCNS Alliance can provide this great advice to incorporate sun-safety into your everyday life both at home, work or at school!

There is a wide assortment of special UV-absorbing clothing available from swimsuits and rash guards to hats, shirts and pants. Be sure to check for the UPF (ultraviolet protection factor) rating of 30 or higher. This means that it will allow 1/30th of the sun’s UVs radiation to penetrate the fabric. For comparison, a regular, white t-shirt has a UPF 5 rating.

Here are some great online stores for your sun protective clothing needs:

Cabana Life Coolibar Sun Precautions Sun Protective Zone Sunday Afternoons UVSkinz

Did you know?

The EPA issues a UV Alert when the solar UV radiation level in your local area is predicted to be unusually intense that time of year. The UV Alert is a warning and will offer simple steps you can take to protect yourself and your family. The UV Alert consists of the SunWise action steps and is posted by ZIP Code and City, State at www.epa.gov/sunwise/uvindex.html.

Do you have a sunscreen tip that you’d like to share with other BCCNS Alliance members? Email us at info@bccns.org and we’d love to share!

SunscreenGenerously apply a broad-spectrum, water-resistant sunscreen with a Sun Protection Factor (SPF) of 30 or more to all exposed skin. Broad-spectrum provides protection from both ultraviolet A (UVA) and ultraviolet B (UVB) rays. Apply sunscreen approximately 20 minutes before going outside so it has time to take effect before you go into the sun. Reapply approximately every two hours, even on cloudy days, and after swimming or sweating.

When applying, remember to shake the bottle first. Although the directions may not say to do this, it’s a good idea because it helps distribute the active ingredients throughout the sunscreen.

Use enough. The AAD suggests using at least one ounce of sunscreen when applying sunscreen to the exposed areas of your body. One ounce of sunscreen is equivalent to filling one shot glass.

Dell Medical School Health Discovery Building – Auditorium

Austin, TX 8 am to 4 pm

Speakers: Drs. Moise Levy & Matthew Fox

Austin Regional One-Day Meeting Saturday, September 15

Thanks to Genentech for their sponsorshipof these one-day meetings.

The BCCNS Alliance has been traveling around the US this summer hosting five Regional One-Day Meetings. Events have already taken place in Chicago, Orlando and Boston. Highlights will be shared in the next issue of The Link. Our last meeting is scheduled for Austin, TX! The agenda for each meeting includes research updates from leading experts, educational lectures, and peer-to-peer open networking. Registration is only $25 per person, which includes a continental

breakfast and lunch.

Remember when you first heard the phrase Basal Cell Carcinoma Nevus Syndrome? Or Gorlin Syndrome? It can be an emotional and overwhelming experience. The BCCNS Alliance is here to make sure that when someone is newly diagnosed or going through a tough time, there is a community ready and willing to educate, help, support, and be there. We are the hub for medical information and the latest research updates. The Alliance is here to ensure that members are connecting with other affected individuals and families, as well as with leading medical professionals and research investigators. These are just a few of the ways the Alliance is fulfilling the vision of empowering those with BCCNS to live rich, full, happy lives. You are the key to making this all happen, so please get involved!

Peer Connect ProgramAre you new to BCCNS, have a question or simply want to talk to someone who knows what it’s like to walk in the same shoes?

Reach out through the Alliance’s new Peer Connect Program. This program connects you with one of our Peer Coaches, who are well-experienced, trained, long-standing members of the BCCNS community. You will be matched up with the most appropriate coach for your needs. These coaches can help reduce patient anxiety and uncertainty while providing unbiased treatment and disease knowledge. For those who are newly diagnosed, these peer coaches will support you, listen to you, and answer any questions you may have. Peer coaches really want to help and can become a wonderful resource and friend. The connections are typically made via email, phone calls or social media, and can blossom from there.

Do you want to become a peer coach?Do you have a wealth of knowledge about

BCCNS and want to make a difference in others’ lives? Do you have extensive experience in dealing with the syndrome and its manifestations? Do you have a certain expertise that can help others? We are always looking for more peer coaches and encourage you to apply. Contact Madeline Miller for more information and an application at madelinem@bccns.org or call her at 267-689-6444.

Share Your Skills to Strengthen the AllianceAre you a graphic designer? Do you have SEO experience? Are you a technical writer? Do you have a social work, counseling or medical background? Did you come across a valuable resource or article that can be added to our resource library or website? There are so many ways to share your professional skills with the BCCNS Alliance and help us grow the organization. We are in a transition phase and can use more volunteers to help us better serve our community.

Fundraise The BCCNS Alliance needs to raise money and awareness across the country! You can help by planning a grassroots event in your hometown. The new BCCNS Alliance staff are experts in this area and can share their ideas and help you along the way. It can be an event as simple as a lemonade stand in your neighborhood, or a bake sale at your local school, or asking for donations instead of gifts for a party. Other events to consider are restaurant nights, where a portion of the proceeds are donated to the Alliance, or a dress down day at your office for a small donation. Really, the possibilities are endless! Every little bit helps and adds up, so don’t think your event has to be grandiose.

Regional One-day Meetings – Coming to a Place Near You!

We Need You to Get Involved In The BCCNS Alliance

Four Regional One-Days…One More to Go!

Save the Date:

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The BCCNS Alliance kicked off the regional one-days in Chicago on May 6. Twenty-five BCCNS Alliance members gathered to listen to presentations by Drs. Ervin Epstein and Joseph Helman, as well as a genetics review by Shelley Weiss. The second one-day was held on May 19 in Orlando, with 20 BCCNS Alliance members in attendance. Drs. Maulik Shah and Ervin Epstein spoke about BCCNS and KCOTs, and students from Dr. James Solomon’s office also shared some insights. On June 29 in Boston, the BCCNS Alliance hosted its third one-day meeting sponsored by Tufts University School of Dental Medicine. In celebration of the school’s 150th anniversary, Tufts opened its doors and hearts to the BCCNS Alliance for dental school tours and a top-notch venue for the meeting. With 23 BCCNS Alliance members in attendance, Dr. Addy Alt-Holland spearheaded a packed agenda with presentations from herself and Drs. James Baleja, Suzanne Olbricht, Daniel Oreadi, and Bichchau Nguyen. Maura Flynn, registered nurse, and Tom Sprague, BCCNS Alliance member, also presented. Unfortunately, vacations and summer schedules were too much competition for our fourth one-day meeting, scheduled for July 21 in San Francisco. The meeting was postponed until sometime in the future, but three BCCNS Alliance members and their families still pulled off their own “mini-meetup.”

The Buttell FamilyIn their Christmas letter, Judy and Duane asked their friends and family to consider making a donation to the BCCNS Alliance! The money raised through this simple, but hugely effective fundraiser, made quite an impact for the Network.

The Caruso FamilyWho doesn’t love some lemonade in the summer? The Caruso Family ran a lemonade stand this summer and donated their proceeds to the Network. Not only did their customers enjoy a tasty beverage, but the money they raised will help support and strengthen our Network’s programs and services.

Julie BreneiserIn honor of her milestone birthday, Julie asked her friends and family to make a donation to the BCCNS Alliance through her personal fundraising site.

Cole SpiegelCole turned the big 1-0 this fall and graciously asked his friends to make a donation to the Network in lieu of gifts. His friends were delighted to support an organization that has helped his family. The money Cole raised will help the Network hold educational webinars this year.

The Lamneck FamilyThe Lamneck Family used their social media connections for a cause this season. Asking their friends and family to make an end-of-the-year donation to the Network in a Facebook post, these donors were happy to support such a great cause and gave generously!

Members Matter: Meet Nichole Fest

What was your first experience with the BCCNS Alliance? I was 34 years old when I attended a conference in Dallas, TX. I got to meet others with the same rare disease and researchers who were running a clinical study that I was participating in. I recorded information about my doctor’s visits to show the impact of living with BCCNS. It was great! We got the chance to get to know each other, hear their stories, talk about our experience living and thriving with BCCNS. How has being connected with the BCCNS Alliance helped you? When I attend a conference, I learn so much more than I could ever imagine about the condition. One session I attended was just for women with BCCNS. I knew about KCOTS, tumors on the chest, basal cells, but I never

knew it could affect your reproductive organs as well. This conversation allowed me to connect the dots and realize the pain I was experiencing during my period wasn’t normal. When I returned to Pittsburgh, I went to see an OB/GYN that was someone from the Alliance recommended. During that appointment, a large cyst was discovered on my ovary, which ultimately led to a full hysterectomy a few weeks later. What advice do you have for someone who is newly diagnosed with BCCNS? It’s important for anyone with BCCNS to stay on top of appointments! For the last twenty years, I have been at the dermatologist every six months. I get my x-rays, I go to my appointments. I am a healthy individual because I have stayed on top of everything.

The BCCNS Alliance wants to thank Nichole for sharing her story and being such a strong advocate for our community. Recently, Nichole celebrated her birthday and asked all friends and family to donate to the BCCNS Alliance in honor of her big day! This Facebook Fundraiser raised over $600. Do you want to share your story? Contact the BCCNS Alliance Office at info@bccns.org.

When she was eight years old in 1987, Nichole Fest went to an oral surgeon to have a cyst removed from her jaw. She’d had this surgery once before, so she thought it was no big deal. Luckily, at this second surgery, her oral surgeon began to ask Nichole’s mother some questions. The surgeon ultimately recommended that they make an appointment with a geneticist at the Children’s Hospital in Pittsburgh, PA, where she was officially diagnosed with BCCNS and her journey began. It was a constant rotation of dentist, orthodontic and oral surgery appointments between the ages of 8 and 23. Over those years, Nichole began to feel like she was managing her health well and understood the syndrome and its manifestations. “I stopped researching and was just living,” said Nichole. Unfortunately, BCCNS threw her a curve ball. “After suffering two concussions back-to-back, my primary care physician researched BCCNS and saw that brain tumors were on the list of manifestations,” remembered Nichole. “He ordered CTS and MRIs and discovered there was a cyst on my sinuses.” Nichole renewed her research about BCCNS online, which led her to the BCCNS Alliance, formerly the BCCNS Life Support Network.

Have you thought about hosting a grassroots fundraiser to benefit the Alliance? There are so many fun, family-friendly ways to give back. Contact Madeline at madelinem@bccns.org to start planning today!

(Continued from page 3) Research using this registry will be especially helpful for best identifying the types of health problems that are more likely to arise in individuals with BCCNS than in the general population and for identifying special risk factors that predispose individuals with BCCNS to developing certain health problems.

Ultimately, while researchers have made significant progress in helping individuals with BCCNS, there is still a tremendous amount of work that is needed to improve the lives of those with this syndrome. Researchers are currently studying many very promising treatment options with the hope that additional studies will continue to reveal better ways to treat BCCNS and one day, discover a cure.

Reid Waldman is a graduate from the University of Missouri-Kansas City School of Medicine and a current dermatology resident at the University of Connecticut. He became interested in BCCNS after many rewarding patient encounters with individuals with BCCNS. He is specifically interested in better understanding the different ways that BCCNS affects individuals.

Grassroots Fundraising - Strengthening our Alliance One Member at a TimeThe BCCNS Alliance is fueled by the generosity of our members. In the last few months, several members have asked their friends, family and

community to support the work of the Network. Thank you to the following people for hosting a grassroots fundraiser!

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Donate Today

Donate today at www.bccns.orgYour monthly contribution of just $5 a month can make this happen.

• I want to access syndrome-specific resources that address my medical and emotional needs.

• I want to know the leading doctors in my area who areknowledgeable about my rare disease and its manifestations.

• I want to know what research is going on for BCCNS and how the discoveries happening in these laboratories will impact me and my family.

• I want updates on clinical trials.

• I want a strong community there for me and others who are diagnosed with BCCNS.

That’s why I make a monthly donation to the BCCNS.Because they share the same vision.