Thank you to everyone who participated in the 2022 Affiliate Summit held in Washington DC September 19-21st. Below you will find an outline of events as well as slides from presentations as they have been made available to us. We’d love feedback on your experience at the Summit to support future planning, if you haven’t already, please complete the Affiliate Summit Survey.

Agenda Recap

Monday, September 19th

Hill Visits

Advocates and Affiliates lead the charge to educate and inform our legislators on FASD and the FASD Respect Act covering 19 states with 48 meetings. For more information on Hill Day, check out the September 2022 Policy Forum Recording here: https://nofaspolicycenter.org/in-case-you-missed-it-september-policy-forum-recording/

Affiliate Summit Welcome and Connecting Time

The Affiliate Summit officially kicked off with a State of Play of the Affiliate Network and an introduction to the Affiliate Network Work Groups. Affiliates were also encouraged to share the work they are doing in their own states with the rest of the Affiliate Network.

Tuesday, September 20th

The first full day kicked off with remarks and a welcome from Affiliate Coordinator Susan Elsworth and the following presentations were heard.

Keynote: The Power of Laughter – Mallori DeSalle

Workshop I: Where Are You Now – Leigh Tenkku Lepper

Workshop II: Growing Your Advocacy – Mike “Keawe” Anderson

Work Groups Meeting Time & Report Out

Wednesday, September 21

FASD United is partnering with the Center for Health Services Research (CHSR) at the Uniformed Services University of the Health Sciences (USUHS) on a new four-year federally funded fetal alcohol spectrum disorders (FASD) health services research initiative in the Military Health System (MHS).

Launched with a kickoff workshop in Washington, D.C. on September 21, 2022, the FASD Prevention and Clinical Guidelines Research initiative will investigate the impact of FASD on military families and the working age population including parents and prospective parents on factors such as resource allocation, burden of disease, quality and efficiency of care, access to care, and population-level health outcomes. 

Affiliates were invited to a joint workshop to kick off the project (read more about the project here)

Objectives

  • Recognize prenatal alcohol exposure (PAE) and fetal alcohol spectrum disorders (FASD) in the context of alcohol and substance use disorder and the role of alcohol in society
  • Understand FASD from a historical and current perspective, the complexities of the disabilities, the lived experience, and the opportunities and challenges for public health and clinical intervention
  • Set the stage for identifying and addressing FASD in the military community, and envisioning the implications of project outcomes for all populations and systems of care

You can access slides from the presentations where available linked below:

Welcome and Opening Remarks  
Tracey Koehlmoos, PhD, MHA, Uniformed Services University of the Health Sciences
Kate Boyce, Susan Carlson & Tom, FASD United
FASD Overview: Impact & Prevalence  
Jeff Wozniak, PhD, LP University of Minnesota
Alcohol and Substance Use Disorders
Rachel Sayko Adams, PhD, Boston University
Joshua Gray, PhD, Uniformed Services University School of Medicine
FASD Prevention – Substance Use Among Pregnant and Postpartum Women and Alcohol Screening and Brief Intervention
Amy Loree, PhD, Henry Ford Health System
Stigma, Bias and Discrimination: Implications for FASD Prevention and Clinical Services
Kathleen Mitchell, MHS, LCADC, FASD United
FASD Diagnosis – Comparative Analysis of 10 Diagnostic Methodologies
Michelle Kuhn, PhD, University of Washington
FASD Lived Expereinces: Strengths and Interventions
Christie Petrenko, PhD, University of Rochester
Panel Discussion: Individuals and Family Members Living with FASD
Jenn Wisdahl, Moderator
Rebecca Tillou
Sean Bosquet
Laura Bosquet
Exceptional Families Network
Austin Carrigg, Exceptional Families of the Military
Blue Star Families
Jessica Strong, Blue Star Families
FASD United Affiliate Network                                  
Susan Elsworth, FASD United, Indiana Alliance on Prenatal Substance Exposure
Panel Discussion: Federal Response to FASD, Agency Overview
Bill Dunty, PhD, Tatiana Balachova, PhD, National Institute on Alcohol Abuse and Alcoholism
Elizabeth Parra Dang, MPH, Centers for Disease Control and Prevention
Dawn Levinson, MSW, Health Resources and Services Administration
Sharon Newburg-Rinn, PhD, Administration for Children & Families

Thank You for Joining Us

Thank you to everyone who participated in the 2022 Affiliate Summit We’d love feedback on your experience at the Summit to support future planning, if you haven’t already, please complete the Affiliate Summit Survey.

Speaker Bios                                                                                   

Malloi DeSalle

Mallori a licensed therapist, which is a good thing because she is also a mother to three busy kids has been married for nearly 20 years. She is professional speaker, an obsessed Oreo hunter and a therapeutic humorist. A fan of humor and helping, Mallori uses her powers for good. Mallori has tasted Oreos from four continents and has even tried to get a shopkeeper in Spain to sell her expired cookies because she hadn’t tasted the flavor yet. The unyielding shop keeper said “Mallori was one tough cookie, but ultimately she is pretty sweet.”

Dr. Tenkku Lepper is Research Professor Emeritus at the University of Missouri and also Instructor at the University of Nevada, Reno. Her work has focused on providing education and training for health providers on prevention of alcohol-exposed pregnancies as well as education, care and treatment for those diagnosed with Fetal Alcohol Spectrum Disorders. During her tenure as professor, she received 20 years of continuous funding as PI from the Centers for Disease Control and Prevention and also from the Substance Abuse and Mental Health Services Administration. Dr. Tenkku Lepper designed a web-based training module for health providers, specifically focused on Alcohol/Opioid Use Screening and Brief Intervention that is utilized by professionals across the country. She is extensively involved at the national FASD United organization, serves on the Board for the National Papillion Program and is President of her own non-profit organization, NOFAS-Missouri.

Leigh Tenkku-Lepper

Michael “Keawe” Anderson

Michael “Keawe” Anderson has been a member of the FASD United Board of Directors since November 2017, and serves as the Treasurer.  He is also on the Policy Committee where he supports FASD United’s legislative priorities by applying his 23 years of policy and legislative expertise. 

In the public sector, Mike served in the U.S. Air Force for 28 years, retiring as Colonel with extensive experience in the Secretary of the Air Force Legislative Liaison Directorate. Following his retirement, he was Chief of Staff to U.S. Representative Don Young (AK), managing Young’s congressional staff to achieve the Congressman’s legislative and political agenda. 

Mike then transitioned into the private sector.  He ran a Chugach Alaska Corporation subsidiary, then managed Chugach’s business development in the Washington D.C. region, then was appointed Chugach’s first Director of Government Relations. He left Chugach having been selected the first Native Hawaiian to serve as the Native American Contractors Association Executive (NACA) Director.  At NACA, he advocated nationally for Native contracting as an economic development tool, and advised Native-owned businesses on small business policy, regulations, and compliance.

Currently, Mike is the Nakupuna Companies Director of Advocacy where he advocates for programs to benefit and support the Native Hawaiian Community by developing and executing plans to advance federal contracting policies and legislation that to optimize Nakupuna’s growth and efficacy.

Mike earned a master’s degree in Business Administration from the University of Northern Colorado, a master’s degree in Strategic Military Studies from the Air University, and a master’s certificate in Government Contracts from the George Washington University. He has a bachelor’s degree in engineering from the U.S. Air Force Academy.