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<div><p class="text-align-center"><strong>2023 PUBLIC MEETING OF THE INTERAGENCY COORDINATING COMMITTEE ON FETAL ALCOHOL SPECTRUM DISORDERS (ICCFASD)</strong></p>
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<p class="text-align-center"><strong>Friday, April 17, 2023</strong></p>
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<p class="text-align-center"><strong>Special Panel</strong></p>
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<p class="text-align-center"><strong>PART I: WHAT IS WORKING IN YOUR COMMUNITY: LESSONS LEARNED FROM LIVED EXPERIENCES</strong></p>
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<p class="text-align-center"><em>Moderator: Jan Lutke</em></p>
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<p><strong>Jan Lutke</strong> was the co-chair of the former National Advisory Committee on FASD to Health Canada, Government of Canada, for five years, appointed by the Federal Minister of Health, and chaired its sub-committee on Quality of Life. She has been a member of many additional provincial and national advisory committees with respect to FASD and was invited to present at the inaugural WHO invitation only Forum on Alcohol, Drugs and Addictive Behaviours in 2019 and attended as an invited FASD expert in 2021. She was the Clinical Research Manager for the Canada FASD Research Network (CanFASD) for ten years until her ‘official’ retirement. She developed, guided, and chaired the annual international FASD research and adult conferences held in Vancouver for the last 34 years and developed and manages the FASD Changemakers and their work. She is a published author on many papers, including the Canadian FASD Diagnostic Guidelines, and book chapters for the University of Washington and University of Alaska Presses, and has written much material on FASD that is widely used. She and her late husband adopted 22 children from foster care, 16 of whom have a diagnosis of FASD and now range in age from 32 to 50. </p>
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<p><strong>Invited Speakers</strong></p>
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<div> <img src="/sites/default/files/styles/image_small_180w_/public/Nicholas_Davis-Magliozzi.jpg?itok=HbDAE3pj" width="180" height="180" alt="image of Nicholas Davis-Magliozzi" loading="lazy">
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<p><strong>Nicholas Davis-Magliozzi</strong> is 19 years old and was diagnosed with full Fetal Alcohol Syndrome (FAS) at the age of three by a physician at the Georgetown University Hospital Department of Genetics. At that time, he was under the foster care custody of his maternal grandmother who adopted him at the age of nine. He currently lives with his grandmother and younger sister, who was also diagnosed with a fetal alcohol spectrum disorder (FASD). Nicholas has served as a Youth Ambassador for FASD United, formerly known as the National Organization on Fetal Alcohol Syndrome (NOFAS). At the age of twelve he was a keynote speaker at the NOFAS 25th Anniversary Gala, held at the French Embassy in Washington D.C. Nicholas’ goal is to help people understand that recognizing the individuality of those with FASD is important.</p>
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<div> <img src="/sites/default/files/styles/image_small_180w_/public/Katrina_Griffin.jpg?itok=rxL6PYrJ" width="180" height="180" alt="image of Katrina Griffin" loading="lazy">
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<p><strong>Katrina (Kat) Griffin</strong>, who is 34, was diagnosed with full FAS in infancy and raised in foster care. She is a well-known speaker on FASD, having presented at many conferences, seminars, and events over the past 10 years. She was part of a team of teens and adults with FASD providing training for second year medical students at the University of British Columbia for over 10 years. She also acts as an advisor to research projects. Kat has been a member of the ALC of FASD Changemakers for ten years and has actively worked on their second Lay of the Land Survey on Quality of Life. She is employed as the FASD mentor for the Asante FASD Diagnostic Centre in British Columbia. Kat's goal is to help others with FASD find their place and to participate meaningfully as members of society.</p>
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<div> <img src="/sites/default/files/styles/image_small_180w_/public/Kathy_Hotelling.jpg?itok=6Quogb9T" width="180" height="181" alt="image of Kathy Hotelling" loading="lazy">
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<p><strong>Kathy Hotelling, PhD, ABPP</strong>, is a licensed clinical psychologist in North Carolina and Board Chair and Co-Founder of NCFASD Informed, Inc. (est. 2018), which is an affiliate of FASD United. NCFASD Informed is the only nonprofit in North Carolina dedicated to those individuals who have been exposed to alcohol in utero so that they might met their potential. After an extensive career in universities as a psychologist, administrator, and graduate faculty member with a specialty in eating disorders and ethical and legal issues, Kathy elected to stay home with her then 13yo daughter, diagnosed with an FASD at 10 years of age, to help her navigate the tumultuous teen and early adult years. During these past 16 years, Kathy has dedicated herself to learning as much as possible about FASD. She initiated the Triangle Area FASD Caregivers Support Group in 2008. She has presented nationally and locally through webinars and at conferences, consulted with families, schools, residential facilities, attorneys, and other groups in the systems of care.</p>
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<div> <img src="/sites/default/files/styles/image_small_180w_/public/Kathy_Mitchell.jpg?itok=jDcFWiAK" width="180" height="180" alt="image of Kathy Mitchell" loading="lazy">
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</article>
|
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|
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<p><strong>Kathleen T. Mitchell, MHS, LCADC, </strong>is Senior Vice President of FASD Prevention and Recovery Services, FASD United<strong>. </strong>She served as Vice President and Spokesperson for FASD United (formerly the National Organization on Fetal Alcohol Syndrome-NOFAS) for 24 years. She holds a Master of Human Services (MHS) degree and is a licensed clinical alcohol and drug counselor (LCADC). Ms. Mitchell served as principal investigator (PI) and project officer for government projects that aimed to prevent FASD, reduce stigma, and support families and individuals living with FASD. She taught at Georgetown and Northwestern University Medical Schools and served on the special committee of the World Health Organization (WHO) developing guidelines for the identification and management of substance use disorders in pregnancy. In 2004, she founded the international birth mother mentorship program, the Circle of Hope (COH) and in 2020, founded Recovering Mothers Anonymous (RMA). She is a noted invited speaker on Fetal Alcohol Spectrum Disorders (FASD), Women and Addiction and Stigma and has presented for over three decades both nationally and globally. In 1990, Ms. Mitchell testified to Congress at the first hearing on FAS/FAE and in 1992 and 1994 she testified at hearings that later resulted in warning labels on all alcohol products. She has served as an expert to advise media and has been featured in documentaries, television, and news stories, including National Public Radio, NBC’s Later Today Show, BBC Radio, Washington Post, and other. She authored or co-authored twenty-three published papers, and authored handbooks, chapters, and curricula. Ms. Mitchell continues to speak at conferences and provide training and supports the COH speakers bureau that partners with the American College of Obstetricians and Gynecologists (ACOG) in speaking at grand rounds at medical facilities across the U.S.</p>
|
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</div>
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<article class="align-left media-image">
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<div> <img src="/sites/default/files/styles/image_small_180w_/public/Christie_Petrenko.jpg?itok=rUYX07rP" width="180" height="180" alt="image of Christie Petrenko" loading="lazy">
|
||
|
||
|
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</div>
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</div>
|
||
|
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</article>
|
||
|
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|
||
<p><strong>Christie Petrenko, PhD,</strong> is a clinical psychologist and researcher who has been working with people with FASD since 2003. She completed her graduate training with Edward Riley and Sarah Mattson in San Diego, CA and is currently a faculty member at Mt. Hope Family Center, University of Rochester in NY. Her research focuses on developing and evaluating interventions for people with FASD, including the use of mobile health technology to increase access to care. She has experience training teams of providers both regionally and internationally in FASD diagnosis. Dr. Petrenko also runs a multidisciplinary FASD clinic providing diagnostic, intervention, and family support services in Rochester, NY.</p>
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<div> <img src="/sites/default/files/styles/image_small_180w_/public/Justin_Shepherd.jpg?itok=ppyhiMVk" width="180" height="180" alt="image of Justin Shepherd" loading="lazy">
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</article>
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<p><strong>Justin Shepherd</strong>, BFA, who is 42, was diagnosed at age 41 with FASD/ARND by Dr. Paul Connor and Dr. Ken Jones. Justin has BFA in Performing Arts from Western Washington University. He discovered this diagnosis while making a film about FASD awareness, and has since continued to speak at FASD events, panels, and conferences. Justin is married, has two awesome kids and lives in the Colorado Rocky Mountains. He runs a production company (<em>Make it Better Productions</em>) that is focused on bringing attention to all of the facets related to FASD. In 2020, during the heart of the pandemic, Justin and the Make It Better Production family set out to make a film about FASD to raise awareness as alcohol consumption across the US began to rise exponentially. 'The FASD Project' carried Justin across the entire US, allowing him to meet professionals, families, and individuals living with this disability and to hear their incredible stories. Justin has recently been invited to become a member of the Adult Leadership Collaborative (ALC of FASD Changemakers and wishes to continue his journey in advocating for this incredible community and raising awareness on a national and international level.</p>
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<div> <img src="/sites/default/files/styles/image_small_180w_/public/Rebecca_Tillou.jpg?itok=pkcSBlb1" width="180" height="180" alt="image of Rebecca Tillou" loading="lazy">
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<p><strong>Rebecca Tillou</strong>, who is 43, was adopted when she was one month old, and was diagnosed with Fetal Alcohol Syndrome (FAS) at age 34. In 2016, she wrote her autobiography entitled <em>Tenacity</em>, which takes the reader through her adoption search and reunion story, her FASD diagnosis, and struggles growing up. Since her diagnosis, she has become an advocate for all those affected by an FASD in some way, including those without voices. Through advocating, knowledge is born.</p>
|
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</div>
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|
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<p><strong>PART II: THE FASD UNITED FAMILY NAVIGATOR PROGRAM – HERE TO HELP</strong></p>
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<p><em>Moderator: <a data-entity-substitution="canonical" data-entity-type="node" data-entity-uuid="de5549d0-80e1-4897-a30e-39cc122055d4" href="/iccfasd/iccfasd-members/elizabeth-parra-dang-cdc">Elizabeth Parra Dang, MPH </a></em></p>
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<p><strong>Invited Speakers</strong></p>
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</div>
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</div>
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</article>
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<p><strong>Tom Donaldson, FASD United President and CEO</strong>, is responsible for formulating and carrying out the FASD United strategic and business plans, and all programmatic, development and policy initiatives. He has extensive experience in non-profit governance, public policy, government affairs, media relations, social marketing, financial management, and public health. Under his leadership, FASD United has established a network of over 30 affiliated organizations, expanded services to all 50 states, and ensured a four-fold increase in federal and state investment in FASD-related research, public health and services, among numerous other achievements.</p>
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<div> <img src="/sites/default/files/styles/image_small_180w_/public/Heather_French.jpg?itok=9Wsda8lX" width="180" height="180" alt="image of Heather French" loading="lazy">
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</article>
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<p><strong>Heather French, Family Navigator</strong>, is the mother of 5 children who have varying disabilities including, FASD, ADHD, RAD, Selective Mutism and Generalized Anxiety. She learned to advocate and navigate systems to get them the support they needed to have the best possible outcomes. She has a passion for helping families find their way through the systems of supports and resources with the hopes to make the journey a little easier for them. Heather’s passion led her to FASD United where she developed, launched, and supervises the Family Navigation Program. In addition to her work with FASD United Heather also co-hosts a support group for Indiana Families with FASD and serves on Indiana FASD Coalition. She participates in her local county Systems of Care as well as being part of the state level System of Care as member of the Youth and Family Empowerment Team. She is proud to have been part of the process of obtaining Indiana’s first ever FASD state proclamation.</p>
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<div> <img src="/sites/default/files/styles/image_small_180w_/public/Jenn_Wisdahl.jpg?itok=HsfR0ZM7" width="180" height="180" alt="image of Jenn Wisdahl" loading="lazy">
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</div>
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</article>
|
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<p><strong>Jenn Wisdahl, Chief Operating Officer</strong> at FASD United leads the FASD United legislative and policy agenda and supports internal operations at FASD United. She trains members of the FASD community to serve as advocates and works with policymakers to advance FASD legislation. In 2021, Jenn coined federal legislation the “FASD Respect Act”, founded the Stars for Starla youth recognition program for youth with FASDs and started Run FASD, a 5K to raise awareness for FASD, along with self-advocate Rebecca Tillou. Jenn was an executive producer on the award-winning short film “The FASD Project,” is a member of the Board of Directors of the FASD United Washington State affiliate and proud parent to 3 young adults with FASD. Prior to her work with FASD United, Jenn worked in the HR, recruitment, and management sector for many years.</p>
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