Ichthyosis Focus Spring 2016 a Quarterly Journal for Friends of FIRST Volume 35, No

Ichthyosis Focus Spring 2016 A Quarterly Journal for Friends of FIRST Volume 35, No. 2 The Year in

Review2015 Annual Report Last Chance, National Conference June 24-26!

The Kocher family, recipients of the 2015 Volunteer of Year Award Inside This Issue:

FIRST Annual Report 3

RAISE 11

Conference Registration Form 13 & 14

Living Well with Ichthyosis 15

FIRST Advocates 15 Vol. 35 No. 2 Spring 2016

Copyright © 2016 Correspondence by the Foundation for Ichthyosis & Related Skin Types, Inc.® Ichthyosis Focus is published quarterly Corner by the Foundation for Ichthyosis & Related Skin Types, Inc.® Dear FIRST Foundation, Requests to reprint information “FIRST has had such a positive effect on my life. Just reading FIRST’s Ichthyosis contained in the Ichthyosis Focus Focus makes me feel like I am not the only one suffering from ichthyosis. That is should be directed to the editor. a true gift!” The Foundation for Ichthyosis Rich Graham & Related Skin Types, Inc.® 2616 N. Broad Street “The day my daughter was born, I found your website on my phone while in absolute Colmar, PA 18915 despair. I was so grateful to read stories of people living full lives with ichthyosis. It Phone: 215.997.9400 made me feel a lot more relaxed. When we left the NICU our doctors literally just Toll-free: 800.545.3286 printed pages from FIRST’s website for us because it is absolutely the best Fax: 215.997.9403 information available.” Email: [email protected] Janet Holt Web: www.firstskinfoundation.org

Chief Executive Officer “The foundation is doing a great job of keeping everyone connected and up-to-date on Jean Pickford all the newest solutions and findings. We pray that our son still continues to get better Editor as he gets older.” Maureen Neville Blake Harrington

Medical Editor Amy Paller, MD

Editorial Assistant Have you been receiving emails from FIRST? Kimberly Cole If not, contact Lisa Breuning at [email protected] to have your current email address added to our lists. The Foundation for Ichthyosis & Related Skin Types, Inc.® is a 501(c)3 charitable organization supported by public and private donations. All contributions to the Foundation are tax deductible to the full extent of the law.

The editor invites your correspondence. We welcome your comments, observations and suggestions. Please send your letters to Ichthyosis Focus at the address listed above.

Ichthyosis Focus is provided as a service to members of the Foundation as a medium for the free exchange of information. Neither the Foundation for Ichthyosis & Related Skin Types, Inc.® its Board of Directors, its Medical Advisory Board nor the Focus Editors endorse any treatments or products in Ichthyosis Focus. Views and opinions expressed in this publication do not necessarily reflect the views of the Foundation or Foundation officials. PAID ADVERTISEMENT CEO 2015 ANNUAL REPORT Changing World, Changing Ways...

FIRST’s Mission Statement: To improve lives and seek cures for those affected by ichthyosis and related skin types.

“Never underestimate the power of a small group of committed people to change the world. In fact, it is the only thing that ever has.” –Margaret Mead

So, what did we accomplish in 2015? whom we communicate, reaching targeted audiences Lots! Many of our accomplishments with messages that are relevant to their own personal have been featured in our connection to FIRST. publications, website, and social A key player in this new communications media posts. However, there is one effort is a long-time member of our staff, significant highlight that I’d like to Lisa Breuning. Lisa is a familiar face to expand upon, as I believe this many of our members, as she has been a milestone may be the most significant dedicated member of our team for nearly of the year – we have refined our nine years. In addition to her analytical approach on how we communicate eye and technical savvy, over the years, and serve our members. Lisa has gained a keen and comprehensive As you know, we have been supporting our mission and understanding of our membership base connecting our community for over 35 years. And each and the technology to manage their year, our community has grown, flourished and brought us relationships. Last year, Lisa’s role shifted from one step closer to where we stand today – as the global Communications Coordinator to Director of Member leaders in ichthyosis advocacy. In 2015, we not only Relations, which has proved to be an invaluable transition continued to embrace and serve the needs and requests for our members and for FIRST. of our members, but we’ve taken a deeper look at each “My role as Director of Member Relations is completely individual’s personal connection with FIRST. The insights different than my role as Communications Coordinator. I we’ve collected through surveys, member enrollment, event am a more linear thinker, so this is a good fit for me. My participation, donations and specific relationships, has goal for the database is to maximize all of the functionality helped us to better understand our membership on a more that is available and better utilize the information that we personal level. We’ve drawn new conclusions about our collect. If our information is up-to-date, consistent, and support channels and recognize emerging data, like the comprehensive, then we can better advocate on behalf of our fact that FIRST’s largest group of supporters, is also our members. Streamlining some of the day-to-day tasks has patients’ most vital support system – their family. also been a focus, enabling the staff to get the information Through a pointed approach to data analysis, we’ve that they need as expediently as possible.”- Lisa Breuning deepened our knowledge of who our members are, and Conversations and feedback from our members are an what they precisely need from FIRST. For instance, we integral part of our success. On behalf of our staff, we look are learning that a family’s first contact with FIRST is forward to connecting on a greater level with as many of most often through an extended family member, or that our you as possible, and learning more and better ways to medical professional members have the longest retention serve this amazing community. rate of active involvement in FIRST. All of this information All the best, is leading us to a path of more relevant programs and communications, expansion of our potential for patient advocacy, and enhanced service to our entire community Jean Pickford throughout their lives. Our new approach is a true result of CEO, FIRST a changing world. We are reformulating how and to www.firstskinfoundation.org 3 Your volunteer activities, financial gifts, and support of our programs assured that 4,983 affected individuals benefitted from FIRST education, support, and research. THE CHALLENGE • 250 – 400 babies are born with some form of moderate • Genetic tests are available for 32 different gene to severe ichthyosis in the US each year. mutations that are known to cause ichthyosis. • 50 newborns and their families contact FIRST annually. • 0 known cures for ichthyosis.

MISSION PROGRESS 205 nationally and internationally recognized experts in the field of dermatology serve on the 132 Regional Support Volunteers. Medical & Scientific Advisory Board and Physician donors. 2,472 Referral Listing. 633 Affected families joined in 2015. $14,750 awarded through UFIRST scholarships in 2015 to 11 young adults with ichthyosis.

EDUCATE INSPIRE 55 people participated in this “Member stories we read on the website help year’s FIRST to Know Calls. us to realize we are not alone. They are a true 124 educational, informative and inspirational e-communications gift for our affected son.” were sent to over 7,320 affected - FIRST Member Donna Kober families, friends, and medical professionals. 267,679 users viewed our website in 2015. 4 quarterly issues of FIRST Ichthyosis 51 RAISE partners generated $66,417 Focus were delivered to 4,350 affected from 768 donors worldwide in households each quarter of 2015. our inaugural year. In 2015, the FIRST blog, Voices in our 62 events were held in Community, received 5,900 visits from communities across the globe, raising $155,000. 19 different countries.

CONNECT RESEARCH 4 Patient Support Forums held in the US and Canada, $50,000 research grant was awarded to connecting over 150 individuals or families with leading Dr. Ryan O’Shaughnessy to continue his work in dermatologists and the ichthyosis community. targeting the scaling pathways in ichthyosis. 221 Regional Support Network referrals. $50,000 research grant was awarded to Dr. Brittany Craiglow for her study standards of 195 physician referrals. care for newborns with ichthyosis. 322 people tried a new product thanks to the product listing.

4 www.firstskinfoundation.org LOOKING AHEAD FINANCIALS TO 2016 - 2018 Fiscal Year 2015 - Revenue Total $789,461 Grassroots & GOALS Investment Income - 7% Special Events - 32% Membership Engagement - Trustworthy and compassionate support, reliable information and useful Research, Grants resources through engaging relationships throughout a & Scholarships - 33% person’s lifetime Research - Leverage FIRST’s resources to help connect researchers and other organizations to benefit our members General Donations - 27%

Fiscal Year 2015 - Expense Revenue - Achieve annual Total $822,3051 fundraising goal greater Fundraising - 13% Programs, Support than $1 million & Research - 77% Management - 9%

A Dedicated Doctor Takes on a New Role in the FIRST Family Join us in welcoming Moise Levy, MD, as the new President of FIRST’s Medical and Scientific Advisory Board

Dr. Moise Levy, physician-in-chief and chief of pediatric dermatology at Dell Children’s Medical Center has served on FIRST’s Medical Advisory Board of Directors for the past eight years. Dr. Levy is a steadfast supporter of the mission of FIRST as well as a beloved participant in many of FIRST’s support meetings and conferences. We are delighted to embrace Dr. Levy’s vision and enthusiasm for FIRST’s evolving role in the landscape of patient advocacy and ichthyosis research. We are inspired by his deep compassion for those living with ichthyosis, or a related skin type, and his never ending quest for better treatments to help them live the best quality of life possible. Please join us in welcoming Dr. Levy to his exciting new role as president of the Medical and Scientific Advisory Board at FIRST.

“From my early affiliation with FIRST through the MSAB... with Mary Williams and (most recently) with Len Milstone... the intent of the MSAB has been to provide sound medical advice to our patients and families and to provide mentoring to our younger colleagues. While I cannot predict how our roles will evolve over the next few years, fundamentally our responsibilities are to our patients and families. We will continue to work in a collaborative fashion with them through advocacy, medical assistance, mentoring, and research, and to help our excellent staff to make this happen.” - Dr. Moise Levy

www.firstskinfoundation.org 5 BOARD OF DIRECTORS Why FIRST Matters to Me By FIRST’s President of the Board of Directors, Jeff Hoerle

Dear FIRST Members and Friends,

I offer a warm hello to all of you in my first letter as President help.” This distills the crucial of FIRST. The past year has seen great change and growth importance of FIRST. at the foundation—we now have almost 5,000 affected Ichthyosis is a rare condition with members!—and our staff, board of directors, and board of which many physicians have no experience; the connections medical and scientific advisors have all made significant FIRST provides can be life changing. Through Dr. Leonard additional investment of time and resources to ensure FIRST Milstone and Dr. Choate—both leaders at FIRST—we remains at the forefront in meeting the complex needs of the obtained genetic confirmation that Sasha has CHILD ichthyosis community. In both the social media landscape syndrome, a rare form of ichthyosis. This knowledge created and in genetic understanding and technology, the world is the starting point from which we are now developing effective evolving rapidly. FIRST continues to refine its organization treatments. We are forever grateful for this personal miracle and priorities to keep pace with this dynamic change. On and are determined to help FIRST continue to change the behalf of all the lives of families like ours. It is a privilege to be on this journey constituencies and we have considerable ambitions for FIRST’s growing committed to impact, but if my time as president helps even one family as FIRST’s mission much as FIRST helped mine, I will count it a great success. to educate, I invite you to learn about some highlights from the past year; inspire, and why I believe FIRST makes a crucial difference; and what connect, I pledge FIRST hopes to accomplish in the future. that FIRST will In becoming President of the Board of FIRST, I follow in meet the coming some illustrious footsteps. I’ve had the privilege of working challenges with closely with two former Presidents, Mike Briggs and Dave passion and a Scholl, and am excited to build upon their more than ten commitment to years of leadership! During the past year, through an success. impressive collaboration among FIRST members, FIRST Allow me to staff, and the board, we have developed a new four-year provide some strategic plan to support FIRST’s updated mission statement: context for my “To improve lives and seek cures for those affected by involvement ichthyosis and related skin types.” The astute financial and devotion to management of our current and former chief financial the Foundation. officers, Larry Silverman and John Schoendorf, has enabled FIRST connected FIRST to invest in additional staff time. This facilitates my family with the medical researchers who changed my greater outreach; optimizes printed and digital daughter’s life. In 2009, Sasha, then nearly three, suffered communication programs, as well as our use of social media; from an undiagnosed and untreatable condition. My wife and keeps us abreast of cutting-edge medical technology. Allison and I endured years of conflicting opinions and We are the primary source of insight for ichthyosis-related questionable and risky recommendations. We lost faith issues, and we intend to maintain our presence as the locus that the healthcare profession could help. Then, at FIRST’s that brings all of the ichthyosis communities together. Patient Support Forum in Mystic, Connecticut, we One of FIRST’s deepest missions is to help members share encountered the warmth, compassion, and knowledge of and solve the daily problems of managing their condition. Jean Pickford and Moureen Wenik. They received our We all understand the need for better daily skin treatments— daughter not as a medical puzzle, but as a human being in right now! FIRST’s upgraded infrastructure enables more need of support and answers. They connected us with interaction among members—via calls, blogs, emails, etc.— Dr. Keith Choate, who said,“I know what this is, and we can

6 www.firstskinfoundation.org BOARD OF DIRECTORS and more insight from the experts on FIRST’s Medical and which increase the chance of breakthrough concepts and Scientific Advisory Board (MSAB). Great treatment insights treatments. Genetic research is here and FIRST is playing an can come from any member and the more we reach out, the important role. Stay tuned for more to come on this project in more we learn. Our “No Child Left Unknown” program strives 2016! to contact every one of the roughly 300 babies born annually FIRST has accomplished a great deal in thirty-five years. We with moderate to severe ichthyosis. We reach more families are now at a major inflection point where the support we’ve every year; our vision is to reach every family. The more offered and the data we’ve gathered can dovetail with the connections we make, the more lives we can change. I met needs and visions of high-level research. It is time to personally with several new families at the Miami patient accelerate our process. We want to reach more families forum last August and witnessed how sharing stories brings faster and encourage greater genetic understanding sooner. hope. My own email correspondence with FIRST members This requires your support. Support comes in many forms. galvanizes my dedication to the foundation. Every single We need volunteers to assist new families as they adapt to person has something important to say; FIRST strives to a world that includes ichthyosis; we need members to host combine these voices into a powerful force for advocacy. informal events to increase ichthyosis awareness in local FIRST is very fortunate to have on its board and the MSAB, schools and communities; and, as always, we need the worldwide leading medical experts in ichthyosis and donations. FIRST has a long history as a successful, related skin types. We are unique in how we connect these change-driving, and beloved organization; all of this is due individuals and their institutions. This enhanced discourse to the power and commitment of you, FIRST’s individual among experts, the current genetic revolution, and the advent members. Please join with us to help FIRST provide the of pathogenesis-based personalized medicine, provides a support and leadership necessary to change the lives of high-powered (and singular!) recipe for medical and those affected around the world by ichthyosis and related scientific breakthroughs. We intend to harness FIRST’s skin types. relationships with these leaders and their powerful On behalf of FIRST’s staff, board of directors, and MSAB, organizations to pull the future closer, sooner! A major first I thank you for your commitment to FIRST, and I very step has been to deepen FIRST’s relationship with the much look forward to seeing as many of you as possible Ichthyosis Registry at Yale (IRAY). This will provide at our National Conference in San Diego this summer! decisive answers about specific gene mutations to affected individuals; it will also offer a comprehensive pool of information to global researchers. The cumulative result of My best regards this is better data, which, over time, equals better insights— Jeff Hoerle - President, Board of Directors

2015 Board of Directors

JEFF HOERLE PRESIDENT KEITH CHOATE, MD, PHD WILLIAM B. RIZZO, MD

LARRY SILVERMAN CFO KIMBERLY COLE ERIC SCHWEIGHOFFER

MOISE LEVY, MD JONATHAN DYER, MD RACHEL SEE VICE PRESIDENT GREG LICALZI, JR. ROBERT SILVERMAN DENISE BENEDETTO SECRETARY TRACIE PRETAK DANIEL J. SIEGEL, ESQ. GENERAL COUNSEL GABRIELE RICHARD, MD Board Members Emeriti

PHILIP FLECKMAN, MD AMY PALLER, MD MARY L. WILLIAMS, MD LEONARD M. MILSTONE, MD DAVID SCHOLL, PHD

www.firstskinfoundation.org 7 CHIEF FINANCIAL OFFICER

What a wonderful year for FIRST. The reach and success of our organization has been growing at a terrific clip. Our financial stability has remained intact despite the additional demands and significant research contributions that have been made. We give great thanks to Jean and her professional staff for their continued commitment to excellence and their enthusiastic support to all. Jeff Hoerle has stepped in as our new president with great passion, enthusiasm, and leadership. He has helped take this group to even greater heights and continues to enhance our greater good. Thanks for all you do, Jeff, and your tireless energy and efforts.

Now to the state of financial affairs. We had a strong year for the period ending September 30, 2015. Based on our audited financial statements, net assets were slightly down by $104,294. This was totally expected due to research grants paid for the fiscal year. We granted over $150,000 in research this last fiscal year. We were actually close to $110,000 in net income over and above our original budgeted numbers, mostly due to a very favorable expense control that was well under the budget. Overall, our income was almost $33,000 more than the projected budget. Once again, the lion’s share of contributions is spent on FIRST’s programs and services. We continue to manage our assets through SunTrust and have a strong investment management team managing our portfolio. Our Investment Committee continues to closely monitor all aspects of our progress and performance with the SunTrust organization. Please feel free to reach out at any time should you have any questions or concerns about our financial affairs. I wish all of you a continued year full of great health, peace, and contentment.

Warmest regards, Larry Silverman - CPA, CFP, CFO, Board of Directors

Donor Listing (This listing includes all donations made during the 2015 calendar year)

Branislav Blagoyevitch Vaga LLC Ms. Hugh Choy Ms. Julie Dunipace $100 - $249 Bloom Real Estate Group LLC Ms. Judith Cichowicz Mr. Kevin Dunipace 007 Pest Control, Inc. Mr. Jeffrey Bonjo Mr. and Mrs. Sean Cina Harry and Jeni Durant 58-74 Grand Avenue Tire Corp. Mr. Artem Borchakovski Mr. and Mrs. David Cina Mrs. Cynthia Early Mr. Scott Aaronson Mr. and Mrs. James Borden Ms. Elizabeth Cipoletta Mr. Steven Eccher Mr. and Mrs. Robert Adamo Mr. and Mrs. Jack Borland Mrs. Mary Clair Mr. and Mrs. Thomas Egan Jr. Dr. and Mrs. Harvey Adams Drs. Renato and Juliet Bosita Clairwood #40 AMLA Ms. Teri Ehrlich Adaptive Driving Access, Inc. Mr. and Mrs. Robert Bowie Jr. Mr. and Mrs. David Clapp Mr. Ralph Ekonen Rolena Adorno PhD Ms. Sharon Boyle Mrs. Donna Clare Mr. and Mrs. Mark Ekonen Mr. and Mrs. Gumersindo Aguila Jr. Mr. and Mrs. Michael Bradley Ms. Patricia Clavin Mrs. Betty Ellen Ms. Margareth Alonzo Mr. and Mrs. Travis Bricker Cleveland Indians Baseball Company Mr. and Mrs. Donald Enting Altered Images Color Salon & Day Spa Ms. Tresea Briggs CNB Bank Mr. and Mrs. George Estes Ms. Kathy Alvarenga Mr. William Britton Ms. Lisa Coakley Ms. Diane Esty Mr. Harold Ames Ms. Nellie Brooks Mr. Adam Cole Mr. and Mrs. Andrew Evan Mr. Clement Amore Mr. Mark Broude Mrs. Kimberly Cole Mr. Don Evans Mr. David Anderson Mr. and Mrs. Jerry Brown Mr. John Conlee Mr. and Mrs. Ray Evans Magnus and Anna Anderson Ms. Amy Brown Mr. Paul Connolly Mr. and Mrs. Troy Evans Okey Anderson Mr. and Mrs. Ernest Brown Mr. and Mrs. Kenneth Cornwell Mrs. Audrey Evans In Memory of Shirley & Carl Anderson Ewan Brown-Wight Mr. and Mrs. Michael Cosgrove Mr. and Mrs. Richard Fasciano Anonymous (19) Mr. and Mrs. Brad Bryant County Municipal Employees’ Supervisors’ and Ms. Laura Fash Mr. and Mrs. Gerald Arendt Magnus Brynestam Foremens’ Union Mr. and Mrs. Bob Feldman Mr. and Mrs. Tom Armstrong Ms. Jennifer Bube Ms. Patricia E Crockett John Ferguson MD Mr. and Mrs. Robert Ash Mr. and Mrs. James Buccella Mr. Ralph Curton Jr. Ms. Marcia Ferguson Mr. and Mrs. Mohsen Ashkeboussi Dr. and Mrs. Patrick Burkhart Ms. Erica Daniell Mr. Gary Fernet Auto Magician Mr. and Mrs. William Burns Bobbie Danino Ms. Holly Finn Mr. and Mrs. Douglas Auw Mr. Christopher Burns & Ms. Cristina Crimaudo Ms. Rosemary Davis First Equity Mortgage Ms. Jacquelyn Bach Mr. John Burton Mrs. Rhonda Davis First Savings Bank Ms. Rebecca Ann Bach Mr. and Mrs. John Butler Mr. and Mrs. James Dawson Mr. Lamar Fletcher Mr. and Mrs. Thomas Bachand Mr. and Mrs. Richard Butler Jessie Deely Esq. Mr. Steven Flury Ms. Eileen Baltazar Ms. Christine Butler DelGrande & Montefusco, Inc. Mr. Craig Foreman Hooman Bamdad Mr. and Mrs. Robert Caligan Dell Employee Engagement Fund Ms. Carol Fox Mr. Randy Barr Mr. and Mrs. Noll Campbell Mr. and Mrs. Richard DeLoughary Ms. Rebecca Frankwicz Mr. and Mrs. Richard Barry Ms. Florence Campbell Mr. and Mrs. Steven DePoy Joe and Janice Franz Susan Bayliss MD Mr. and Mrs. Paul Cantwell Ms. Serena Dettman Ms. Edythe Free Mr. and Mrs. Brian Beck Mr. and Mrs. George Cardinal Ms. Courtney Devin Mr. and Mrs. Charles Friddle Mr. Joseph Benincasa Carey Mac’s Salon Mr. Steve Dickson Ms. Jackie Friedman Ms. Barbara Berger Mr. and Mrs. Robert Carney Ms. Giulia DiMarzo Mr. and Mrs. Roger Fugman Mr. Lynn Bernard Ms. Sarah Carroll Mr. and Mrs. James Dolan The Funky Monkey Mrs. Shirley Bernard Mr. and Mrs. Rodolfo Castillo Mrs. Joyce Dombrowski Ms. Frances Gabaldon Ms. Norma Bertuzzi Dr. and Mrs. Daniel Cecconi Mr. Greg Donahue Mr. and Mrs. James Gaffney Mr. and Mrs. Robert Bialer Mr. and Mrs. John Cerminara Ms. Cathy Donnelly Mrs. Linda Galloway Mr. Sander Bieber & Ms. Linda E. Rosenzweig Ms. B.J. Chandler Mr. and Mrs. Emil Drain Captain Joseph Galluccio Mrs. Mardel Bierwagen Mr. and Mrs. Alexander Cheek Mrs. Marianne Dugoni Ms. Debbie Gamble Ms. Shawn Bittner & Mr. Stephen Olsthoorn Chevron Humankind Mr. Frank Duncan & Ms. Karen E. Shine Mr. Mark Garvin Ms. Diane Blackstone Mr. Vincent Chirico & Ms. Angela DiGiglio Ms. Anne Dunipace Mr. and Mrs. Reggie Gassman

8 www.firstskinfoundation.org Mr. and Mrs. Gregory Gathy Ms. Stephanie Knauss Mr. Kevin Mulcahy Mr. Joel Sanderi Gathy Home Repair Service, Inc. Mr. and Mrs. Frederick Kober Mr. Thomas Mullins Mr. and Mrs. Gordon Sanders Mr. and Mrs. Gary Gelormino Kocher Farm and Tack Mr. and Mrs. Matthew Mulqueen Ms. Barbara Sanders Mr. Andrew George Dr. and Mrs. W. R. Konneker Ms. Isbel Munoz Mr. Stuart Sanders Mrs. Linda George Mr. William Kraybill Mr. Rick Muroski John and Becky Sandifer Ms. Mary Jo Gerland Ms. Linda Kroeger Mr. and Mrs. George Murphy Mr. and Mrs. Mark Santoro Mr. Mohammad Haroon Ghalib Rev. Kermit Krueger Mr. Richard Murphy Dr. and Mrs. H. G. Sawyer Ms. Nagham Ghandour Mr. and Mrs. Paul Kuhns Ms. Hollie Murrin Ms. Stephanie Sawyer-Ames Ms. Kimberly Ghaney KVC Solutions, LLC Mr. and Mrs. Frank Musso Mr. and Mrs. David Saxon Ms. Cynthia Gibbons Olof Lönnroth Mr. and Mrs. Gerald Myers Mr. and Mrs. Shawn Saylor Mr. and Mrs. Richard Gibson Ms. Heather Laberinto Ms. Michelle Myers & Mr. Ashley Hogg Mr. and Mrs. Charles Scheidt Ms. Kathryn Gifford Laborers Int’l. Union of North America Robert and Virginia Myers Mr. and Mrs. Ronald Schiff Mr. and Mrs. Ferdiand Gigl Mr. and Mrs. Andre Landry III Mr. Eric Nagareda Mr. James Schlachter Mr. and Mrs. Brett Gilbreath Frank & Darlene Lange Matt & Candace Nelson Mrs. Arden Schlegel Mr. Ernest Gilchrist Mr. and Mrs. Gary Lauters Mr. and Mrs. Gerald Nerone Ms. Faye Schmit Mr. Jeff Gleason Ms. Nancy Le Mr. and Mrs. Matthew Newman Mr. and Mrs. Eric Schneider Mr. Theodore Glowacky & Ms. Ann Pokalsky Mr. Bob Lebda Ms. Angela Ng Mrs. Norma Scholl Mr. and Mrs. Donald Gober Ms. Ann Ledezma Mr. and Mrs. Ernest Nightingale Mr. and Mrs. Bill Scholl Ms. Andrea Gold Ms. Jenny Lefkowski Ms. Deborah Nobriga Ms. Kathy Schroeder Mr. James Gomez Mr. and Mrs. Jason Legate Mrs. Dawn Nolet Mrs. Ada Laverne Schwartz GoodSearch/GoodShop Ms. Nancy Lemer Dr. and Mrs. David Norris Dr. and Mrs. Joseph Scirica Dr. and Mrs. John Goodsell Ms. Kate Lenaway Undercoffer Mr. Jon Nussbaum Mr. and Mrs. Michael Scirica Goshen Center School Mr. and Mrs. Lance Lesher Nutrition Depot Mr. and Mrs. William Scully Mr. and Mrs. David Gosselin Ms. Carol Lesiak Ms. Sharon O`Brien Mehervan Sethi Mr. and Mrs. William Grady Mr. and Mrs. Kenneth Levitan Mr. Edward O`Connor Ms. Rosanna Sforza Mr. and Mrs. Charles Greene Mr. and Mrs. Edward Leyba & Mr. John Paul Leyba Mr. and Mrs. Kevin O’Boyle Mr. Thomas Shaer & Lisa Shelnitz Mr. Carl Greenfeld & Dr. Rachel Brandt-Greenfeld Mr. and Mrs. Gregory LiCalzi Sr. Ms. Sonja Och Kajsa Mr. Brian Shea Ms. Susan Griess Mrs. Ethel Lindberg Ms. Antonina Odindo Mr. F. Kevin Shea Mr. and Mrs. Jack Groom Lodge Martha Washington #38 AMLA Emil Og & Felix Lexberg Shell Oil Company Foundation HERO Matching Ms. Mary Gross Loiseau Construction, Inc. Ms. Ellen Olivier Gifts Program Ms. Beverly Groves Ms. Carol Losey Magnus Olsson Ms. Patricia Shiffner Dr. Diane Haggis & Mr. Douglas Haggis Mr. Steven Lower Ms. Michelle Omalley Ms. Amy Shook Mr. and Mrs. Gary Hahn Mr. Wayne Lucas Mr. Alan Orme Mr. Christopher Short Mrs. Nancy Hamill Mr. and Mrs. Harold Lustgarten Mr. and Mrs. George Orso Asa Silfverberg Mr. Dan Hamilton Ms. Erin Luther Mr. and Mrs. Frank Osowski Mr. and Mrs. Robert Simmons Mr. and Mrs. Darren Hamilton Mr. and Mrs. Fred Lyford Ms. Victoria Ovelgonne Mr. and Mrs. Kenneth Simpson Ms. Carolina Hane Mr. and Mrs. James Lynch Ms. Heidi Overton Dr. Maura Simpson Tyler and Renee Haning Ms. Ashley Mack Mr. and Mrs. Allen Overway Ms. Margaret Sinclair Mr. Scott Hanks Ms. Sherri Madonia Ms. Julie Oxford-Sommers Petra Sintorn Mr. and Mrs. Dan Hanson Mrs. Anita Maemone Mr. and Mrs. Paul Pacheco Mr. and Mrs. John Sipe Jr. Ms. Ann Harley Ms. Gloria Maffettone Mr. Mikael Palmer & Ms. Lisa Andersson Palmer Mr. Jesse Sipper Mr. and Mrs. Timothy Harper Mahomed Sales & Warehousing, Inc. Mr. and Mrs. John Papp Dr. and Mrs. Michael Sisack Dan and Kathy Harper Mrs. Clara Makowski Mr. and Mrs. Patrick Paris Ms. Lisa Sligh Mr. and Mrs. Adam Hartman Mr. and Mrs. Joseph Malfara Ms. Monique Parsons Mr. and Mrs. Lloyd Smith Mr. and Mrs. James Harvey Ms. Debora Mallouk Ms. Holly Pastor Ms. Jeanne Marie Smith Mr. and Mrs. Mark Hawn Sr. Yamini Manickam Mr. and Mrs. Steven Pateuk Mr. and Mrs. John Snyder Mr. and Mrs. Frank Hazel Ms. Paige Mansell Mr. Dhiren Patra Softerware, Inc. Ms. Cora Hefley Mr. and Mrs. Peter Marchiano Mr. Stephen Patrick Mr. and Mrs. Dennis Sopher Ms. Jennifer Heinemann Mr. Kenneth Markley Mr. Nick Payne Mrs. Caroline Spayde Mr. and Mrs. John Hemmer Mr. Fernando Marques Ms. Jeanne Penney Dr. Mary Spraker Ms. Thelma Henry Ms. Nicole Marshall Ms. Elizabeth Pennington Mr. and Mrs. Curtis Sproull Ms. Susan Hentz Mr. Timothy Marszalek Mr. Nicholas Perez Mr. and Mrs. Brian St. Louis Mr. and Mrs. Rodney Herris Mr. Christopher Martin Ms. Stacy Peters St. Mark’s United Methodist Church Mr. Sean Hickey Ms. Kathy Martin Mr. and Mrs. Jeffrey Peterson Stanley High School Hidden Talent Art Studio Ms. Donna Martineau Mr. and Mrs. Donald Peterson Mr. and Mrs. Peter Stano Mr. and Mrs. Scott Hirz Mr. and Mrs. Roberto Martinez Mr. Johan Petersson Mr. and Mrs. Larry Staton Mr. and Mrs. Thomas Hislop Mr. Thomas Marty Mrs. Patricia Pfeiffer Mr. Christopher Stefanos Mr. William Hoerle Mr. and Mrs. Guy Mason PG&E Corporation Foundation Mr. and Mrs. Kurt Stenn Mr. and Mrs. Kurt Hoffman Mr. and Mrs. J. David Mast Mr. and Mrs. Jim Phillips Mr. and Mrs. Lauren Stephens II Ms. Laura Hogan Mr. and Mrs. Richard Maurer Mr. Bradley Phillips Mark Stepovich DDS Mr. Peter Holm Ms. Rosemary Maye Ms. Virginia Pickles Mr. William Stern Mr. and Mrs. Tom Holmes Mr. and Mrs. Mark Mayone Pilates Studio of Friendswood Ms. Janese Stimmel Dr. Kristen Hook Mr. and Mrs. Richard McArdle Mr. and Mrs. Marlon Poole Mr. and Mrs. Ronen Strassburg Mr. Adam Hopkins Mr. and Mrs. Robert McCabe Mr. Jay Poole Mr. and Mrs. Harry Stultz Mr. Larry Hornback Ms. Kimberly McCormick Mr. and Mrs. Robert Pratt Ms. Jennifer Suarez Ms. Jeanne Hotchkiss Ms. Doris McCue & Mr. George V.W. Ball Ms. Priscilla Alta Pratt Mr. and Mrs. Joseph Suffield Kelly Hubbard Mr. and Mrs. James McGovern Ms. Judith Prichard Virginia Sybert MD Mr. Christopher Hussey P. J. & Lisa McGuigan Mr. Alan Prince Mr. George Sycip Ms. Sarah Hutchinson Ms. Caroline McGuigan Progressive Casualty Insurance Co. Tanglewood Group Ms. Patricia Jacklitch Ms. Christina McHale Ms. Kathleen Quinn Mr. Mark Tanner Steve and Nancy Jackson Ms. Claire McHugh Ben Raimer MD & Sharon Smith Raimer MD Mr. and Mrs. Donald Tasser Mr. and Mrs. Jerome Jacobsmeyer Mr. Matt McLane Kalpana Raina Technology Marketing Corp. Mr. and Mrs. David Jansa Mr. John McTaggart & Ms. Kristine Bernhardt Mr. and Mrs. John Reardon Mr. and Mrs. Mel Teetz Jay Hereford and Margaret Winsor Charitable Fund Mr. James Meier Mr. and Mrs. Larry Reeves Ms. Maria Tessinari Ms. Lisa Jewett Ms. Teresa Mendiola Ms. Cathy Register Mr. Marcus Thell Patrik Johansson Merck Partnership for Giving Mr. and Mrs. James Register Douglas Thomas MD Corey Johnson Mr. Gary Metz Ms. Jaime Resendes Mr. and Mrs. Scott Thompson Mrs. Sharon Johnston Mr. David Metzker Mr. and Mrs. John Retondo Ms. Heather Thompson Mr. Andrew Joncich Mr. and Mrs. Charles Michael II Vin and Lucia Ricci Ms. Kathryn Thompson Mr. and Mrs. James Jones Ms. Jill Micsky Ms. Carol Richardson Reine Thoren Mr. and Mrs. James Joyner Mrs. Laila Migally Ms. Pauline Ridenour Mr. and Mrs. James Thorn Mr. and Mrs. Hilel Kagan Mr. and Mrs. James Miller III Mr. and Mrs. Mark Rieger Titan HK Inc. Ms. Maria Kahn Mr. Michael Miller Ms. Paula Rivers & Mr. Steven R. McConnell Tom Sheridan Insurance Agency, Inc. Mr. Edward Kaier Mr. and Mrs. Gary Miller Mr. and Mrs. William Robbins The Towers Victorian Inn Ms. Tejal Kamdar & Mr. Jason Snyder Mr. Alan Milstone Mr. and Mrs. Joseph Roberts Ms. Shelley Trojanowski Ms. Grace Kataoka Ms. Regina Miozzi Mr. and Mrs. Kyle Robinson Joe and Melinda Trojanowski Ms. Marianne Katz Mr. and Mrs. Matt Molchan Ms. Alice Rodkey Tropic Supply, Inc./The DelVecchio Family Mr. Steve Kealey Mr. Josh Molsbee Ms. Shirley Rogers Mr. and Mrs. Roland Unruh Mr. Michael Kenny Mr. and Mrs. Dominick Mondi Ms. Martha Rogers Mr. and Mrs. Jason Ura Mr. Eric Kim Mr. and Mrs. Nicholas Mondi Ms. Lauren Roland Mr. and Mrs. Dietmar Urbat Kimco Consulting, Inc. Mrs. Patricia Mondi Mr. and Mrs. John Ross Ms. Libe Valdez Mr. Jim Kingsbury Moody National Bank Mr. and Mrs. Joseph Ruggiano Mr. John Valdez Mrs. Linda Kister Ms. Elizabeth Mooney Rushton & Company Mr. and Mrs. Zachary Van der Meer Jan Kjellberg Mr. and Mrs. L. Kristopher Moore Mr. and Mrs. Michael Ryan Ms. Fulvia Veronese & Mr. Marino DeMarzo Mr. and Mrs. Raymond Kleinert, III Ms. Lisa Moran Ms. Jessica Sadelund Mr. and Mrs. Mark Verratti Mrs. Gail Kleintop Ms. Kassie Morgan Sabux, Inc. Mr. Matthew Vilim Ms. Margot Klima Mr. Daniel Morris Ms. Loretta Sahoo Mr. Keith Vitale Ms. Kellie Kline Ms. Virginia Morsman Mr. Lester Salamon Mr. and Mrs. Thomas Voll Mrs. Susan Klopp Mr. and Mrs. Frank Mosunic Mr. and Mrs. Peter Salit Mr. and Mrs. Charles Wagner

www.firstskinfoundation.org 9 Mr. and Mrs. John Allen Waldrop III Ms. Anne Harriman Ms. Jane Barry Ms. Sarah Davie Mr. and Mrs. Ron Wallace Ms. Judith Hartmann Mrs. Isabell Blanton DBG Services, LP Mr. John Walls Ms. Barbara Hawke Ms. Regina Bower Mr. and Mrs. David Denman Mr. and Mrs. Samuel Walters Mr. Mark Hawn Mr. and Mrs. William Bowman Deutsche Bank Americas Foundation Mr. and Mrs. John Wandolowski Mr. and Mrs. Timothy Heslin II Mr. and Mrs. Bert Broekstra Dona Wood Family Fund Ms. Donna Warga Ms. Jill Hirschfeld Mr. Jovita Carranza Edwards Lifesciences Foundation Mr. and Mrs. Deshdeep Wasu Mr. Alexander Hoerle Mr. and Mrs. Doug Chaney Mark Fagan DDS Ms. Judith Watts Mrs. Brenda Hood Mr. and Mrs. Rodney Chapin Wen Fan DMD, MD Mr. and Mrs. Thomas Watts Ms. Katherine Huggins Mr. and Mrs. Salvatore Corbo Dr. and Mrs. Phil Fleckman Mr. and Mrs. Donovan Weger Ms. Carole Jahnke CustomInk Campaigns LLC Ms. Bobbi Florian Mr. David Weglarz Ms. Ann Johnston Mr. Steve Day The Gaffney Foundation Mr. Nicholas Weinand Meera and Bharat Kamdar Dell Employee Engagement Fund GE Foundation Kris Weinberg Mr. and Mrs. Richard Kass Russell and Carla Dietz Mr. and Mrs. Ken Gendotti Mr. and Mrs. Michael Weinert Mr. and Mrs. Richard Keathley Mr. and Mrs. Mark Evans Matt & Cristina Goebel Mr. and Mrs. Bill Westlake Kelly Mill Elementary School Ms. Carly Findlay Mr. James Griffin Jr. Mr. and Mrs. Richard Wiese Ms. Anna Kennedy The Fred R. Fernandez - Irma R. Rodriguez Hacienda Gardens Mr. and Mrs. Dennis Wiklund Ms. Marsha Kent Foundation Mr. and Mrs. David Heyson Mr. Michael Wilburn Mr. John Kilmer Mr. and Mrs. Carlos Godby Mr. and Mrs. Robert Hoerle Wilcox Sportsmen’s Club Dr. Samira Kirmiz Ms. Sue Green Mr. and Mrs. Scott Hollenbeck Mr. and Mrs. Robert Willcox Ms. Carmen Klafter Mr. and Mrs. Mike Hall Mr. and Mrs. Joseph Hugenberg Ms. Barbara Williams Mr. Matt Kozinski Mr. and Mrs. John Havrilla Robert Hyde DDS Mr. and Mrs. Peter Williams Mr. and Mrs. James Kuzik Mr. and Mrs. Leo Hecke Mr. and Mrs. John Jessiman Mr. Thomas Wilson Laborers Int’l. Union of North America Mr. Stephen Henry JK Painting and Decorating Ms. Ann Winters Laborers` Local 225 Mr. and Mrs. Marty Hollingsworth Jr. Mr. Kevin Kelly Ms. Elizabeth Wirstrom Mr. Harry Lancaster III & Ms. Jane G. Henderson Mr. William Horton Jr. Mr. and Mrs. Mark Klafter Ms. Debra Witmer Dr. Leslie Potter Lawley & Mr. and Mrs. Robert Hutchinson Mr. and Mrs. Wolfgang Knabe Ms. Amy Wittman Mr. Thomas J. Lawley, Jr. Industrial Packaging Systems Mr. Robert Kraybill & Ms. Durreen Shahnaz Mr. David Wohlfarth Ms. Kelley Linn The Isidro J. Gonzalez Living Trust Songbae Lee Mr. David Wright Mr. James R. Lowe The Karlssons Joseph McMurray DMD Mr. and Mrs. James Wu Mr. Thomas Lyons Mr. and Mrs. Thomas Kennedy Mr. and Mrs. Michael Miller Albert Yan MD Mr. and Mrs. Rick Malatesta Mr. and Mrs. Stephen Klafter Ms. Debie Montana Genet Yonis Mrs. Margaret Manning Laborers Int’l. Union of North America Mr. & Mrs. Todd Mooney Mr. Kevin Young Mr. and Mrs. Omar Marrero Ms. Lynn Langford Ms. Edie Nordlund & Mr. Bob Nordlund Mr. and Mrs. Mike Young Mr. and Mrs. Harold Mason Mr. and Mrs. Paul Licursi Mr. David Norris Mr. and Mrs. Edward Zawacki Dr. Erin Mathes Kyle and Deann Look Ms. Marcia Ohlwiler Mr. Eric Zugerman Mr. and Mrs. Simon Morris Mr. and Mrs. Bruce Lynch Amy Paller MD & Etahn M. Cohen Mr. Glenn Neurohr Mr. and Mrs. Jeffrey Lyngaas Mr. and Mrs. James Pate $250 - $499 Mr. and Mrs. Kenneth Nichols Ms. Nancy Mantel Mr. and Mrs. Thomas Petelin AmazonSmile Ms. Kristine Norton & Mr. William W. Wall Ms. Dorothy Martin Mr. and Mrs. James Phillips Snehal Amin Mr. Timothy Ohlwiler Mr. and Mrs. John McCoy Mr. and Mrs. Michael Potack Dr. and Mrs. Christopher Anadale Ms. Lavanya Palakshareddy Ms. Amy McKee Mr. and Mrs. Joseph Proscia M. Annab Ms. Patricia Patock Mr. and Mrs. Andrew McNelly Mr. and Mrs. Jeff Ricci Anonymous (4) Pearland Pediatrics, P.A. Mr. and Mrs. Robert Melton Gabriele Richard MD, FACMG Aquatic Attractor Ms. Claudia Penas Drs. Leonard and Ellen Milstone William Rizzo MD Mr. and Mrs. Christopher Barta Ms. Esther Pinto MMG Renovations Mr. and Mrs. Craig Saylor Mr. Todd Bartlett Mr. and Mrs. Anthony Poselenzny Mr. Joseph Morsman III Mr. and Mrs. Charles Schaffer Mrs. Heather Bauman Ms. Kim Price Mr. and Mrs. David Murray Mr. Eric Schweighoffer Mr. Kenneth Beck Ms. Marguerite Pullen Ms. Meghan Nesselroade Ms. Jennifer See & Rachel See Mrs. Ann Benedetto Mike and Glenda Queen Mr. and Mrs. Warren O’Brien Jr. Drs. Pedro and Lucy See Mr. and Mrs. Marc Benedetto Mamal Rahimi Ormco Corporation Mr. and Mrs. Vincent Sellecchia Bergseth Brothers Ms. Ella Rajnys Mr. and Mrs. Juha Paakinaho Sewer & Tunnel Miners Union Ms. Aimee Bigham Mr. Max Ramirez Mr. and Mrs. Richard Pedtke Charitable Foundation Mr. Joseph Shank & Ms. Patricia Pairman Ms. Renee Bizzell Rare Kids, Inc. Peterson Commercial LLC Ms. Nomi Silverman Ms. Jane Graves Blackford Mr. John Richardson Jr. Mr. and Mrs. Brent Pfeiffer Mr. and Mrs. Lawrence Silverman Mr. and Mrs. Christopher Block Mr. and Mrs. Angelo Sampona Mr. Peter Philips Dr. and Mrs. Robert Silverman Mr. and Mrs. John Bouhan Scelba Enterprises LLC dba The Learning - Pitney Bowes Mr. and Mrs. Ronald Swenson Heather Brandling-Bennett MD Experience of Roseland Mr. and Mrs. Robert Ponzo Ms. Janie Thompson Mr. and Mrs. Barry Brandt Ms. Mary Schafer Mr. and Mrs. Roger Pretak Mr. and Mrs. John Tierney Mr. and Mrs. Lewis Brinkley Mr. and Mrs. David Schell Mr. and Mrs. David Purcell Toyota Motor Sales, USA Ms. Kerri Bruce Mr. Stephen Schweighoffer Ms. Suzanne Ragg Mrs. Margaret Vernet Dr. Anna Bruckner Mr. Armando Sciullo Mr. and Mrs. Victor Rice Vestal Central Schools Dr. and Mrs. David Bryson Mr. and Mrs. Frank Selvaggio Lee and Ken Roberts Mr. and Mrs. Andy Wohlgang C & G Industrial Supply Terry and Rusty Sharkey Rock Roofing and Construction, LLC Ms. Denise Yong Capitol Dance Company Mr. and Mrs. Elliot Shulman Mr. and Mrs. Mark Saylor Ms. Nancy Yu Caravan Beads, Inc. Mr. and Mrs. Daniel Siegel Mr. and Mrs. Bryan Schell Dr. and Mrs. Ruey Yu PhD, OMD Central Hose Social Club Mr. Jeffrey Simon Matthias Schmuth MD Mr. Henry Chauncey Jr. Rama Shankar Singh PhD Mr. Harold Schoendorf Ms. Renee Churnin Dr. John Smaha Mr. and Mrs. Gregory Shea $5,000 - $9,999 City Of Parma Employees Ms. Betty Sparaco Mrs. Janet Showers-Patterson & Allergan Foundation Ms. Marcia Clayton-Hollimon Sarah Spencer Foundation Mr. Day Lewis Patterson Mr. and Mrs. Michael Briggs Dr. and Mrs. John Compton Mr. and Mrs. David Spruill South Troy Timing Association Mr. Tim Dang Costco Wholesale Corporation Mr. and Mrs. Larry Spruill SR Lotion Flint Center Brittany Craiglow MD Mr. and Mrs. Eric Stafford Mr. and Mrs. Harry Sundik Chris & Laura Phillips Mr. and Mrs. Joe Cronin Mr. and Mrs. David Stevenson Ms. Katie Swenson Mr. John Schoendorf Crown Laboratories, Inc. Mr. and Mrs. Mike Tobey Texas Gauge & Controls, Inc. Select Equity Group Foundation Cum Laude Group, Inc. Mr. and Mrs. Sam Unruh Jr. TWWC, Inc. D/B/A Tony Walker & Co. Mr. Martin Shkreli CVS Health Foundation Reverend and Mrs. Franklin Vilas Volume Salon Tang Fund Mr. Mike Daversa Mr. and Mrs. Richard Weinert Ms. Mary Anne Wegmet Dr. Eugene Van Scott Mr. and Mrs. John Deering Mr. and Mrs. Alfred Westlake Mary Williams MD & Peter Elias MD Ms. Roberta DeLuca & Marla E. Capsambelis Mr. and Mrs. Brian Wetzel Ms. Edna Wong $10,000- $99,999 Mr. and Mrs. Michael Dennison Mr. and Mrs. Bud Wheeler Mr. and Mrs. Thomas Wornom Ace in the Hole Foundation, Inc. Mrs. Karen Dewling Mr. Christopher Williams Jeanette Ziemek DDS The Ambrose Monell Foundation Ms. Lorraine Drago Mr. and Mrs. Sammy Williams Galderma International S.A.S. Dr. and Mrs. James Stark Draper Mr. David Witt $1,000 - $4,999 Mr. Jeff Hoerle & Ms. Allison Draper Mr. and Mrs. Drew Earhart Wrinkle, Gardner & Co., P.C. Dr. Mark Ajlouni & Dr. Connie Ajlouni Mr. George Loening Ms. Carolyn Bacica Fahey Mrs. Sherry Zailer Anonymous (4) Dr. and Mrs. David Scholl Mr. and Mrs. Roy Farmer Mr. and Mrs. Brian Zavitz Mr. and Mrs. James Babcock Mr. and Mrs. David Fasanella Sherri Bale PhD $100,000 + Mr. and Mrs. Joseph Femminella $500 - $999 BeAed Lennox Foundation Mr. and Mrs. Lucas Fiore Jr. Ms. Laura Alessio Ms. Gioia Bianchi-Williams Mr. and Mrs. Thomas Frost Rex Amonette MD & Johnnie Dacus Amonette Mr. Brian Brager Mr. and Mrs. Gary Gagliani Anonymous (5) John Browning MD Gerland Team, Inc. Kjartan Armann MD Dr. Brian Cheng Glacier Tek Inc. Mr. John Armstrong Keith Choate MD, PhD Mr. Joao Alberto Graca Ms. Kim Auer Dr. and Mrs. Jason Cohen Mr. and Mrs. Scott Grams Azteca America Mrs. Marie Cox Mr. and Mrs. Michael Hamilton Ms. Claudia Barry Dr. and Mrs. Clifford Daugherty

10 www.firstskinfoundation.org JUNE 13 - JULY 31, 2016 What’s RAISE? Once your donation web page is ready, take action and tell the In its second year, RAISE is FIRST’s international fundraising world! E-mail your RAISE page to friends, neighbors, family... campaign which enlists the support of members, family and anyone! Be sure to share your messages on social media, too! friends around the world to work together and raise awareness, funding and hope for all those affected with ichthyosis. Join a Group of Advocates Throughout the fundraising campaign, FIRST will work with all How can I help? RAISE Partners to help achieve your goal, whether it’s helping Each RAISE partner will receive their own personal RAISE you build your RAISE fundraising page, providing you with page and step-by-step instructions on how to easily a prompt to email your friends or just to give you a high five customize your RAISE web page. You can set your fundraising for your fundraising efforts! You can also network with other goal, share your story, upload a picture – make the website all RAISE partners to learn tips and share stories on how they about YOU and why FIRST is important to YOU! meet their fundraising goal.

Where Do the Funds Go? This year as a result of your 2015 donations to FIRST operations… • 30 more families will be able to attend the 2016 National Conference in June, some meeting others with ichthyosis for the very first time. • 12 new FIRST to Know calls have been scheduled, ranging from guidance for grandparents of those affected, to understanding occupational therapy, to how to navigate your way through health insurance. • 4 patient support meetings were held where nearly 150 members across the country could speak with medical experts, make new friends, and find new information regarding caring for their condition. In 2016, we hope to increase these opportunities for support and connection so that no one will ever feel that they are coping with a rare and complex skin condition, all alone.

For more information, or to sign up for RAISE, email Madeline Bergman at [email protected] or call FIRST at 215.997.9400.

“My daughter asked me to buy a lifetime supply! It is the best her skin has ever looked. Prior to using the Mitt she was using green scouring dish pads, loofahs and exfoliating gloves. The MicrodermaMitt is incredible! The scaling is much less everywhere...but some places, like her arms especially, look almost like normal skin.” Removes dry skin cells and scaling instantly using only water! “We have been using it about 6 days a week. It has done wonders for her! Nothing else I’ve used even comes close to getting the amount of dry skin exfoliated from her body. I’ve tried spa mitts, loofah pads, and scrub brushes. The Mitt works SO MUCH BETTER than anything I’ve used before. Since using the MicrodermaMitt, her skin doesn’t dry out as fast and she doesn’t get nearly as itchy during the day.”

“The MicrodermaMitt is AMAZING!! I cannot tell you enough how happy I am that I found this mitt for my daughter. After our first bath using it, I was Before After one use speechless! Her skin was soft, smooth, shiny and so healthy looking. Her skin has been wonderful since we started using the Mitt. It looks so much smoother Discounts available by contacting FIRST @ 800.545.3286 and virtually flake free. The skin also comes offso To Order: www.MicrodermaMitt.com easy without much effort.”

www.firstskinfoundation.org 11 LAST CALL! 19th Biennial National Conference - San Diego, June 24-26

What Should I Expect? Clinical Screening and/or Research Visits – The conference is an amazing, worthwhile, and moving event Be a Participant! for the entire family. There will be an early bird registration Conference attendees will have several options for visits and welcome room reception on Thursday night. Official with ichthyosis medical experts and participating in registration begins early Friday morning. The workshops will clinical research. end by 4:30 pm, so attendees are on their own for Friday night activities, including the optional pizza and trolley ride. Work- Friday, June 24 - Dr. Amy Paller and her colleagues from shops will continue Saturday throughout the day until 5:00 pm. Northwestern University have discovered what may cause the The dinner/dance party begins at 6:30 pm and features a live red skin of many forms of ichthyosis and will be starting a new DJ, party games, and a raffle. Sunday workshops will end at medication trial this summer based on the results. On Friday 12:30 pm, which will be followed by a closing session and only, all affected conference attendees will have the farewell lunch. Friendships are made that are life-changing. opportunity to participate by having their blood drawn and a biopsy done for personal analysis of what drives inflammation. What’s on the Agenda? If you are interested in participating in this clinical trial at the In addition to the exclusive opportunity to participate in a conference, or at Northwestern University, please contact clinical screening appointment or research visit with the Yale Thy Huynh at [email protected] or 312.227.6486 Ichthyosis Research Project team, the agenda focuses on for more details. many different aspects related to living with ichthyosis. Disease and age appropriate discussions for adults and teens, Saturday, June 25 – Dr. Keith Choate and his team from genetics, research updates, group networking, specific care, Yale University will be conducting genetic research and skin management, and communications workshops are all clinical visits. Participants can choose one of three options: featured. For the complete agenda, visit our website at 1) a 15-minute appointment to discuss any questions or www.firstskinfoundation.org. concerns you may have with expert physicians; 2) a one-hour, more in-depth appointment to enroll in the Ichthyosis Registration Registry at Yale (IRAY) for research studies and a 15-minute Registration for the conference can be completed using the appointment with expert physicians. For new enrollees, this registration form in this newsletter or registering online at option will involve providing a saliva sample, photographs, www.firstskinfoundation.org by June 8. Registrations without a and completing a questionnaire, or; 3) for those already completed form and payment will not be considered complete. enrolled in the Ichthyosis Registry at Yale (IRAY), you are Cancellations received prior to June 8 will be refunded less encouraged to still sign up, as there will be an opportunity a $25 per person administrative fee. No refunds issued after to update information and ask any questions. June 8. Please note: Registration does not include your hotel room. Please go to www.firstskinfoundation.org for updates Join the New GENEration on room availability at the Marriott Mission Valley and Have you received a genetic diagnosis? alternate lodging. Now is the time to GET DIAGNOSED and play an important role in ichthyosis research. FIRST is playing their part by Kid-A-Palooza supporting a transformational scientific endeavor with the Social programs for all affected children and their siblings, world’s leading institution in ichthyosis research, Yale ages 1 to 12, are an integral part of the conference. University. The Ichthyosis Registry at Yale (IRAY), available Participants will enjoy activities, entertainment, educational to investigators worldwide, will be the largest host of ichthyosis programs, and refreshments. A licensed childcare company patient information – critical data that holds the key to will provide this service; a nominal fee is charged to confirm better, more targeted treatments, and eventual cures. The your participation. Ichthyosis Registry at Yale (IRAY), sponsored by FIRST, is the next evolution of ichthyosis research.

PLEASE SEE OUR ONLINE CONFERENCE PROGRAM FOR INFORMATION REGARDING HOTEL AND TRANSPORTATION, MEALS, AND LOCAL ATTRACTIONS. www.firstskinfoundation.org

12 www.firstskinfoundation.org Surf’s Up! for the 2016 National Conference Registration Form

Registration can be submitted by completing this form or registering online at www.firstskinfoundation.org/conferences. All registrations must be received by June 8th. Registrations with missing information or payment will not be considered. Cancellations received prior to June 8th will be refunded, less a $25 per person administrative fee. No refunds issued after June 8th.

Family Last Name: ______Contact Person:______

Address: ______

City/Town :______State/Province: ______Zip/Postal Code:______

Country: ______Home Phone:______

Cell: ______Email:______

Type of Ichthyosis: ______

 I give FIRST permission to publish names, contact, and type of ichthyosis in the conference roster, which will be distributed to attendees, vendors & faculty attending the event.

 I give FIRST permission to use and distribute any photos or videos taken at the conference, in which I, or my family, may be a part, including but not limited to use in newsletters, appeals, social media, website and reports.

Affected with Relationship to Participating Participating ichthyosis or a person affected? First Name Last Name Date of Birth Age in Kid-a- in FIRST's Got T-Shirt Size related skin (mom, brother, Palooza? Talent Show? type? uncle, friend, etc.)

S L es es es No No No S L L L Provide address if different than above

www.firstskinfoundation.org 13 Celebrate FIRST’s 35th anniversary with a $35 gift to support the Conference Scholarship Fund - helping those who need it most....

14 www.firstskinfoundation.org FIRST ADVOCATES Get informed. Stay involved. FIRST staff members Moureen Wenik and Christine Wassel headed to the Pennsylvania State Capitol in Harrisburg on March 16 to participate in Rare Disease Day PA 2016. The purpose of this event is to raise awareness at the state level for the 1 in 10 individuals living with a rare disease and the challenges they face. They met with State Representative Todd Stephens and Eric Pauley, Assistant to State Senator Stewart Greenleaf, to discuss the National Organization of Rare Diseases’ topics concerning medical foods coverage, prescription cost sharing and newborn screening. Both contacts were extremely interested in the impact to those with rare disease. The best news of the day was that Pennsylvania has recently established a Rare Disease Caucus that will enable rare disease to have a voice at the Capitol. We even participated in the press conference for the caucus. Please contact Chris at [email protected] if you would like to see how you can affect change at the state level. Together we are strong!

Members Seized the Opportunities to Advocate on Rare Disease Day “The event at California State on February 29 was very successful. I gave the FIRST brochure to Andrea Vergne, the California State NORD organizer, to include in the agenda as well in the State Bill SCR 108 introduced by both Senators and Assembly Members”. -Rama Shankar Singh, Ph.D. Living Well With Ichthyosis By FIRST MSAB member, Dr. John Browning WONDER by R.J. Palacios. New York: Alfred A. Knopf, 2012, ISBN: 978-0-375-86902-0 “I don’t usually review fictional novels but this one was just Via does not get much time with her too good to pass up! I believe, Wonder, by R.J. Palacios, parents and has been forced to act like can serve as a tool of support for families and individuals with a little adult from a young age. We learn about her struggle of appearance differences.”- Dr. John Browning simultaneously loving and resenting her brother. We also learn Wonder is a story of a boy named August who has an about Via’s own struggle with trying to fit in and navigate the incredibly rare facial deformity. In his own words he refers to social dynamics of high school. A special character in the book it as “mandibulofacial dysostosis.” Like so many individuals is Summer. She narrates her experience in pursuing genuine with birthmarks or genetic conditions, Augie feels defined by friendship with Augie while being ostracized by others. We also his appearance. He feels the countless stares of strangers hear from the perspective of Jack Will, one of Tushman’s three and hears gasps of surprise whenever he is out in public. who originally befriends Augie. Halloween is his favorite holiday because he can wear a mask Jack tries to live in two worlds - the world of being Augie’s and be “normal” for a day. Between Augie’s parents’ desires to friend and the world of being cool. He bad mouths Augie to protect him from others and his numerous surgeries (27 since Julian (the bully) and Augie overhears the comment. However, birth), he is home schooled until the 5th grade. Jack begins his own journey of transformation as he learns Being an intelligent child he is able to matriculate at an about the value of other people and standing up for what is academically selective private school in upper Manhattan right, in spite of the consequences. At the end of the book Mr. where the head of school, Mr. Tushman, tries to make Augie’s Tushman addresses the middle school in a closing ceremony, transition less difficult. He does this by negotiating with three reminding them, “If every single person in this room made it a current students who are perceived by him to be the best and rule that wherever you are, whenever you can, you will try to brightest. (Unfortunately this also reveals that children are act a little kinder than is necessary –the world really would be often able to fool adults by acting one way while treating their a better place.” He then reminds us that the best way to peers completely differently). As it turns out one of these kids, measure growth is in “what you’ve done with your time, who is very popular with his peers, quietly bullies Augie. how you’ve chosen to spend your days, and whom you have touched this year. That to me is the greatest measure The book starts out from the perspective of Augie. We learn of success.” directly from him about what life is like having so many people stare at you all the time. He has few friends and his best This book is a great resource for those with ichthyosis, their friend recently moved away. His world revolves around Star friends, classmates, and their families. Wars and XBOX. But just when we are feeling sorry for Augie, Editor’s Note: If you don’t have time to read, consider his sister, Via, begins to narrate her perspective. We often downloading the book from Audible.com and listening in forget about how difficult it is to be a sibling of someone who your car. The narrators do a great job with the different is different. character voices. www.firstskinfoundation.org 15 2616 N. Broad Street • Colmar, PA 18915 Spring 2016 A Quarterly Journal for Friends of FIRST Volume 35, No. 2 The Year in

Review2015 Annual Report Last Chance, National Get to know the FIRST Community with Conference2016 National FIRST to Know Calls! Conference FIRST to Know calls are a great way to meet other families and JuneSan 24-26! Diego! individuals. Each call is centered on a topic or subject, and lasts for one hour. You can decide which calls are interesting to you and phone in. You June 24 - 26, 2016 can be an active participant, or just listen to what others are saying. All calls are held at 8 pm Eastern Time. Contact Moureen Wenik, [email protected], for more information.

May 22 - Understanding Occupational and Physical Therapy June 19 – Erythrokeratoderma Variabilis (EKV): Sharing Information July 24 – Grandparents: Helping Your Grandchild and Your Adult Children August 28 – Sjögren-Larsson Syndrome: Sharing Information September 25 – Bathing with Microbubble Technology October 23 – Lamellar: Sharing Information November 27 – How to Work with Your Insurance Company Registration December 18 - Palmoplantar Keratodermas (PPK): Sharing Information Forms Inside! September. 10, 2016 1:30pm-4:30pm Pages 13 & 14 SAVE the Ichthyosis Picnic At Northwestern University, Use #FIRSTNC16 Evanston, Illinois for Conference DATE! Join Dr. Amy Paller and other affected families for a fun and informative event! Updates! More info at www. firstskinfoundation.org