FASD Hope

FASD Hope is a podcast about Fetal Alcohol Spectrum Disorder (FASD), through the lens of parent advocates with over nineteen years of lived experience.

Episode 109 highlights the AMAZING advocacy and work of the Adult Leadership Committee of the FASD Changemakers. Two members of the ALC, CJ Lutke and Kat Griffin are featured in this episode. 

FASD Changemakers

The Adult Leadership Committee (ALC) of FASD Changemakers is a renowned group of citizen researchers and experts who each have diagnosed FASD. It is made up of CJ Lutke, Myles Himmelreich, Katrina Griffin, Justin Mitchell, Anique Lutke and Emily Hargrove, a group who have experienced all the events commonly associated with FASD but have learned how to overcome obstacles, maximize potential and re-define success. They use their combined lived experience to work together as consultants, advisors, trainers, presenters, mentors, group moderators, bloggers, and as various university research project team members. As well, they develop and lead their own survey research, which has received wide attention from researchers, institutions, agencies, organizations, and government and is currently being used to help focus research directions and questions.

CJ Lutke, who is 38, was diagnosed with full FAS as an infant and adopted by her foster family at age five, along with an older brother and sister who also have FASD.  She is a well-known speaker on FASD, having presented at and participated in many conferences, seminars, training sessions and other events over 20 years.  CJ actively provides advice and consultation and participates both as an advisor to and working member on research projects.  She has just been appointed to a high-level Access to Justice Committee chaired by the Chief Justice of the Supreme Court of British Columbia.  She is the author of an on-line blog that is hosted by NOFASD Australia and followed globally.  As well, CJ has been a member of the Adult Leadership Committee (ALC) of FASD Changemakers for 15 years.  She was the co-lead on their first ground-breaking Lay of the Land Survey on the health and physical issues of over 500 adults with FASD that has received wide international attention and was published in 2020.  CJ is currently the lead author on their second Lay of the Land Survey on the Quality of Life of 468 Adults with FASD, preliminary results which were released in March of 2021 and has been widely presented including to the ICCFASD Executive Committee of NIAAA and will be presented again at their global open meeting in April of 2022.   CJ believes that those with FASD must challenge perceptions about possibilities and outcomes and change the future.  Her goal is to help others with FASD find their voice and to understand that we are greater when we work together.

Katrina (Kat) Griffin, who is 32, 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 also part of a team of teens and adults with FASD providing training on FASD for second year medical students at the University of British Columbia for over 10 years and will be joining that team again this summer.  She also acts as an advisor to and working member on research projects and has just been appointed to an Access to Justice Committee chaired by the Chief Justice of the Supreme Court of British Columbia.   Kat has been a member of the ALC of FASD Changemakers for 10 years and 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.

In this AWESOME episode, CJ and Kat share: their journeys with FASD, how the ALC of the FASD Changemakers formed, the extensive work of the ALC / FASD Changemakers, their EDUCATIONAL and ELOQUENT response to the infamous and ableist SNL Skit and their hopes for individuals with FASD. #craftthedraft

EPISODE RESOURCES-

[email protected]

Instagram- https://www.Instagram.com/fasdchangemakers/

Twitter - https://www.twitter.com/FASDChangeMakrs/

CJ Lutke’s Blog -

https://www.nofasd.org.au/community/cj-lutke-blog/

FASD Hope -

https://www.fasdhope.com/

[email protected]

Instagram - https://www.instagram.com/fasdhope/

Facebook - https://www.facebook.com/fasdhope1

Twitter - https://twitter.com/fasdhope

LinkedIn- https://www.linkedin.com/in/natalie-vecchione-17212160/

Clubhouse - @natalievecc

Check out our new book “Blazing New Homeschool Trails: Educating and Launching Teens with Developmental Disabilities” by Natalie Vecchione & Cindy LaJoy  BUY IT NOW!

FASD Hope is a podcast about Fetal Alcohol Spectrum Disorder (FASD) through the lens of parent advocates with over nineteen years of lived experience. 

Dr. Douglas Waite is the featured guest of Episode 108. Douglas Waite, MD, FAAP is the Chief of Developmental Pediatrics of the BronxCare Health System and an Assistant Professor of Pediatrics at the Icahn School of Medicine, Mount Sinai Medical Center. He is also the Vice-Chair of the Board of Directors for FASD United.

Previously, he served as medical director of The Children’s Village, a community foster care agency and residential treatment center established in 1851, located in Harlem, the Bronx and Dobbs Ferry, New York. He has used time caring for children at The Keith Haring Clinic as an opportunity to teach medical students and pediatric residents the challenges of providing comprehensive medical care to children in foster care and the juvenile justice system.

Dr. Waite is Assistant Clinical Professor of Pediatrics at the Icahn School of Medicine Mount Sinai Hospital, was elected one of ten national FASD Champions by the American Academy of Pediatrics in 2016, sits on the National Mental Health Advisory Board of the Child Welfare League of America, and is a member of the Society of Developmental-Behavioral Pediatrics. Dr. Waite has special interests in fetal alcohol spectrum disorders, post-traumatic stress disorder and the effects of child abuse and neglect upon child development. 

In this RESOURCEFUL and REASSURRING episode, Dr. Waite addresses the following topics: his clinical experience / what led him to become involved in working with the FASD / NB populations, highlights from his endnote presentation at the "Arkansas None for Nine" online 2021 conference, the importance in focusing on the Adaptive Functioning core of FASD / NB diagnoses, the need for clinical pathways for FASD Diagnoses,  Critical Information for parents to get in place when parenting a child with an FASD (especially in urgent situations), why the FASD community is #strongertogether and many words of encouragement and hope for listeners.

EPISODE RESOURCES -

FASD United - 

http://fasdunited.org/

Dr. Douglas Waite - Mt. Sinai 

[email protected]

https://www.mountsinai.org/profiles/douglas-waite

https://www.bronxcare.org/physicians/find-a-physician/detail/douglas-waite/

*Program Note* - FASD United now has a "Family Navigator", as Dr. Waite was discussing in this episode.

https://fasdunited.org/family-navigator/

Choline Research Study Links -

https://jneurodevdisorders.biomedcentral.com/articles/10.1186/s11689-020-09312-7

https://med.umn.edu/news-events/medical-school-professor-uses-choline-help-treat-children-fasd

Families Moving Forward (with Dr. Christie Petrenko) -

https://familiesmovingforwardprogram.org/

FASD HOPE RESOURCES -

FASD Hope -

https://www.fasdhope.com/

[email protected]

Instagram - https://www.instagram.com/fasdhope/

Facebook - https://www.facebook.com/fasdhope1

Twitter - https://twitter.com/fasdhope

LinkedIn- https://www.linkedin.com/in/natalie-vecchione-17212160/

Clubhouse - @natalievecc

Check out our new book “Blazing New Homeschool Trails: Educating and Launching Teens with Developmental Disabilities” by Natalie Vecchione & Cindy LaJoy  BUY IT NOW!

FASD Hope is a podcast about Fetal Alcohol Spectrum Disorder (FASD), through the lens of parent advocates with over nineteen years of lived experience.

Episode 107 highlights NOFASD Australia (National Organisation for Fetal Alcohol Spectrum Disorders Australia) and speaks with it's CEO - Louise Gray and COO - Sophie Harrington.  NOFASD Australia has a strong commitment to FASD prevention at a primary, secondary and early intervention level. NOFASD Australia is working towards ensuring FASD is recognized as a disability in Australia, promoting social inclusion by advancing the rights and interests of people living with FASD, and providing the necessary supports to individuals and families at a grassroots level. This advocacy work is fundamentally important in preventing the social, health, economic and justice consequences of this condition for all Australians. In addition to delivering support to families living with FASD, NOFASD Australia also provides education and training workshops to parent and carer groups, government and non-government service providers and school communities throughout Australia.

In this RESOURCE-FILLED episode, Louise and Sophie discuss the following topics: their background and history with NOFASD Australia, how NOFASD Australia has developed and made significant strides over the past three years, resources offered by NOFASD Australia, the upcoming NOFASD Australia Virtual Conference Forum - FASD@50 - in May 2022, how to reach NOFASD Australia and hopes / goals for 2022. 

EPISODE RESOURCES -

NOFASD Australia -

https://www.nofasd.org.au/

NOFASD AUSTRALIA HELPLINE (AUSTRALIA ONLY) -

1-800-860-613

NOFASD FASD Forum - FASD@50 - May 13-14, 2022

https://www.nofasd.org.au/contact-us/

Facebook - https://www.facebook.com/NOFASD.Australia

Instagram - https://www.instagram.com/nofasd.australia/

Twitter - https://twitter.com/NOFASDAustralia

LinkedIn - https://www.linkedin.com/company/nofasdaustralia/

FASD Hope -

https://www.fasdhope.com/

[email protected]

Instagram - https://www.instagram.com/fasdhope/

Facebook - https://www.facebook.com/fasdhope1

Twitter - https://twitter.com/fasdhope

LinkedIn- https://www.linkedin.com/in/natalie-vecchione-17212160/

Clubhouse - @natalievecc

Check out our new book “Blazing New Homeschool Trails: Educating and Launching Teens with Developmental Disabilities” by Natalie Vecchione & Cindy LaJoy  BUY IT NOW!

FASD Hope is a podcast about Fetal Alcohol Spectrum Disorder (FASD), through the lens of parent advocates with over nineteen years of lived experience.

Welcome to the Season 2 Premiere Episode!  FASD Hope is honored to feature Dr. Kenneth Lyons Jones. Dr. Kenneth Jones is the Chief of the Division of Dysmorphology and Teratology at the Department of Pediatrics at UCSD, Medical Director of the MotherToBaby California Pregnancy Health Information Line and Co-Director of the Center for Better Beginnings. He is a pediatrician by training, specializing in the identification and treatment of birth defects. He is actively involved in research, teaching, clinical work, university and public service. Dr. Jones is considered the leading expert of Fetal Alcohol Syndrome (FAS), one of the diagnoses under the FASD umbrella. Dr. Jones was one of two doctors at the University of Washington, who first identified Fetal Alcohol Syndrome (FAS) in the United States in 1973.

Dr. Jones' research has focused on the evaluation and diagnosis of birth defects, identifying the mechanisms of normal and abnormal fetal development and the recognition of new environmental agents that cause birth defects. His work on the recognition of new human teratogens is primarily focused through MotherToBaby California, a counseling and research program funded in part by the state of California and monies received from the Organization of Teratology Information Specialists (OTIS) as a part of a cooperative agreement with the Health Resources and Services Administration (HRSA) of the US Department of Health and Human Services. Dr. Jones has authored over 400 publications in scientific journals as well as several books and he is the author of the textbook titled "Smith's Recognizable Patterns of Human Malformation."

This is an episode that the listener can glean SO MUCH INFORMATION!  Among the many topics discussed in this information-filled episode include: Dr. Jones' career, stigma, his work, goals for 2022 and answering listeners' questions.

EPISODE RESOURCES -

Dr. Kenneth Lyons Jones -

https://www.rchsd.org/doctors/kenneth-lyons-jones-md/

https://betterbeginnings.org/who-we-are/leadership/

https://betterbeginnings.org/who-we-are/leadership/dr-kenneth-lyons-jones-md/

https://medschool.ucsd.edu/som/pediatrics/Divisions/dysmorphology/about/Pages/Dysmorphology_Teratology_Division_Members.aspx

https://pediatrics.med.ubc.ca/2018/03/20/a-retrospective-look-at-43-years-of-fetal-alcohol-spectrum-disorder-fasd-how-did-we-get-here-from-where-we-started/

https://www.facebook.com/UCSDcbb/

https://twitter.com/ucsdcbb

https://www.instagram.com/ucsdcbb/

FASD Hope Resources -

FASD Hope -

https://www.fasdhope.com/

[email protected]

Instagram - https://www.instagram.com/fasdhope/

Facebook - https://www.facebook.com/fasdhope1

Twitter - https://twitter.com/fasdhope

LinkedIn- https://www.linkedin.com/in/natalie-vecchione-17212160/

Clubhouse - @natalievecc

Check out our new book “Blazing New Homeschool Trails: Educating and Launching Teens with Developmental Disabilities” by Natalie Vecchione & Cindy LaJoy  BUY IT NOW!

FASD Hope is a podcast  about Fetal Alcohol Spectrum Disorder (FASD), through the lens of parent advocates with over nineteen years of lived experience.

Welcome to this BONUS EPISODE / Season 2 Sneak Preview of FASD Hope. Before the official Season 2 kickoff, John and Natalie Vecchione, co-founders of FASD Hope give a Dadcast Update. Topics include: changed plans, their family's new chapter, lessons learned and a Season 2 update.

The official Season 2 of FASD Hope kicks off during the week of January 20, 2022!

"But seek first the kingdom of God and His righteousness, and all these things shall be added to you. Therefore, do not worry about tomorrow, for tomorrow will worry about its own things. Sufficient for the day is its own trouble."  - Matthew 6:33-34

FASD Hope -

https://www.fasdhope.com/

[email protected]

Instagram - https://www.instagram.com/fasdhope/

Facebook - https://www.facebook.com/fasdhope1

Twitter - https://twitter.com/fasdhope

LinkedIn- https://www.linkedin.com/in/natalie-vecchione-17212160/

Clubhouse - @natalievecc

Check out our new book “Blazing New Homeschool Trails: Educating and Launching Teens with Developmental Disabilities” by Natalie Vecchione & Cindy LaJoy  BUY IT NOW!

FASD Hope is a podcast about Fetal Alcohol Spectrum Disorder (FASD), through the lens of parent advocates with over nineteen years of lived experience. 

Episode 104 is the Season 1 Finale for FASD Hope!  This episode features Robbie Seale of FASD Family Life (Canada) and Jessica Rutherford of Spotlight on FASD (UK). Robbie, Jessica and Natalie share their reflections of 2021, a REAL conversation about FASD topics…and their goals / hopes for 2022.

Conversation Points include:

-  How do we get family members to learn and understand FASD?

-  Stories of Stigma

-  The Importance of Creating Your "FASD Tribe"

-  Hopes and Goals for 2022

- Jessica's FASD Service Education Program through Nudge Education

EPISODE RESOURCES -

For more information about Jessica Rutherford's FASD Service Education Program - 

FASD Hope -

https://www.fasdhope.com/

[email protected]

Instagram - https://www.instagram.com/fasdhope/

Facebook - https://www.facebook.com/fasdhope1

Twitter - https://twitter.com/fasdhope

LinkedIn- https://www.linkedin.com/in/natalie-vecchione-17212160/

Clubhouse - @natalievecc

Check out our new book “Blazing New Homeschool Trails: Educating and Launching Teens with Developmental Disabilities” by Natalie Vecchione & Cindy LaJoy  BUY IT NOW!

FASD Hope is a podcast series about Fetal Alcohol Spectrum Disorder (FASD), through the lens of parent advocates with over nineteen years of lived experience.

Episode 103 is the SIXTH FASCETS FRIDAY episode, featuring Nancy Hall. This episode is titled "Five Things I've Learned as a FASCETS Facilitator".  Nancy Hall has almost 30 years experience working in the nonprofit sector for the improvement of services for people with disabilities. Nancy's academic background includes psychology, child & youth care, as well as clinical behavioral sciences. Nancy has worked as a FASD Community developer, educator and consultant for the past 15 years. She co-authored a research paper on "Effective Service Provision for People Impacted by FASD" in 2009. Nancy has been a Program Director for FASCETS since 2015 and she has been providing trainings in the Neurobehavioral Model throughout Eastern Canada for the past eight years. Nancy lives in the Toronto, Canada region, acting as both a caregiver and professional.

In this sixth FASCETS Friday episode, Nancy shares five things that she has learned as a FASCETS Facilitator, real life examples of these concepts and words of hope.

You can contact Nancy through FASCETS -

https://fascets.org/

Instagram - https://www.instagram.com/fascets_inc/

Facebook  - https://www.facebook.com/FASCETS

Twitter - https://twitter.com/FASCETS2

For Professionals, Caregivers, Parents

Prerequisite: None

6 FRIDAYS

9:30am-11:30am PT (US and Canada)   

6 two-hour live online sessions 

Workshop seating is limited.

https://fascets.org/workshops/

Note - If you decide to sign up for a FASCETS training, please let FASCETS know that you were referred by FASD Hope (as this helps in supporting FASD Hope as an organization). 

FASD Hope -

https://www.fasdhope.com/

[email protected]

Instagram - https://www.instagram.com/fasdhope/

Facebook - https://www.facebook.com/fasdhope1

Twitter - https://twitter.com/fasdhope

LinkedIn- https://www.linkedin.com/in/natalie-vecchione-17212160/

Clubhouse - @natalievecc

Check out our new book “Blazing New Homeschool Trails: Educating and Launching Teens with Developmental Disabilities” by Natalie Vecchione & Cindy LaJoy  BUY IT NOW!

FASD Hope -

https://www.fasdhope.com/

[email protected]

Instagram - https://www.instagram.com/fasdhope/

Facebook - https://www.facebook.com/fasdhope1

Twitter - https://twitter.com/fasdhope

LinkedIn- https://www.linkedin.com/in/natalie-vecchione-17212160/

Clubhouse - @natalievecc

Check out our new book “Blazing New Homeschool Trails: Educating and Launching Teens with Developmental Disabilities” by Natalie Vecchione & Cindy LaJoy  BUY IT NOW!

FASD Hope is a podcast about Fetal Alcohol Spectrum Disorder (FASD), through the lens of parent advocates with over nineteen years of lived experience.

Episode 101 welcomes back the dynamic duo of Susan Shepard Carlson (Former First Lady of Minnesota and Chair of the FASD United Legislative and Policy Committee) and Jennifer Wisdahl (FASD United Policy and Training Center Coordinator). Together, Susan and Jenn provide: a final 2021 update of The FASD Respect Act / H.R.4151 / S.2238, the progress of the bill, ways to advocate for The FASD Respect Act and most importantly...how YOU can help in getting this CRITICAL NATIONAL FASD LEGISATION PASSED!

IMPORTANT - Families of those with FASD / FASD Self Advocates / those in the FASD Community in the following states are ESPECIALLY needed to help advocate to their senators / representatives:

OREGON, IDAHO, MONTANA, SOUTH DAKOTA, ARIZONA, NEW MEXICO, NEW JERSEY, LOUISIANA, ARKANSAS, MISSOURI, MISSISSIPPI, SOUTH CAROLINA, WEST VIRGINIA, TENNESSEE

For more information, please contact… 

Jenn WIsdahl, Policy and Training Center Coordinator

[email protected]

202-601-2530

For more information about The FASD Respect Act -

https://nofaspolicycenter.org/the-fasd-respect-act/

Circle of Stars Online Event -

Friday December 3, 2021- 8-9 pm Eastern Time

https://nofaspolicycenter.org/event/circle-of-stars-celebration/#tribe-tickets

EPISODE RESOURCES -

FASD United (Formerly NOFAS)

http://fasdunited.org/

Facebook - https://www.facebook.com/fasdunited

Instagram - https://www.instagram.com/fasdunited/

Twitter - https://twitter.com/FASDUnited

LinkedIn - https://www.linkedin.com/company/fasd-united/

FASD Hope -

https://www.fasdhope.com/

[email protected]

Instagram - https://www.instagram.com/fasdhope/

Facebook - https://www.facebook.com/fasdhope1

Twitter - https://twitter.com/fasdhope

LinkedIn- https://www.linkedin.com/in/natalie-vecchione-17212160/

Clubhouse - @natalievecc

Check out our new book “Blazing New Homeschool Trails: Educating and Launching Teens with Developmental Disabilities” by Natalie Vecchione & Cindy LaJoy  BUY IT NOW!

FASD Hope is a podcast series about Fetal Alcohol Spectrum Disorder (FASD), through the lens of parent advocates with over nineteen years of lived experience.

FASD Hope is celebrating it's 100th Episode!  Episode 100's  guest is FASD Champion Advocate and FASD Specialist, Dan Dubovsky, MSW. Dan Dubovsky is a clinician working in behavioral health in a variety of systems including residential treatment, outpatient services, HIV/AIDS, medical social work and training in a variety of positions. Dan has 25 years experience in addressing FASD from a personal and professional point of view. Dan provides consultation in a number of areas to agencies, systems of care, communities, states and provinces to improve outcomes for individuals, families and the programs that provide services to them. Dan is the former FASD Specialist with the SAMHSA FASD Center for Excellence. Dan continues to work as an independent FASD Specialist.

In this INFORMATION and HOPE-FILLED episode, Dan shares the following: his journey as a parent of a son with an FASD, how he went from FASD parent advocate to FASD Specialist (and much more!), the complex relationship between FASD and Substance Use treatment, why we need to better identify those individuals with FASD in Substance Use Treatment Programs, advice for parents advocating for their children with FASD and his words of encouragement and hope for those in the FASD community. 

EPISODE RESOURCES - 

Dan Dubovsky, MSW  will be leading a two-part webinar series  on November 30, 2021 and December 2, 2021. This webinar series is sponsored by: Proof Alliance NC, The ARC of NC, NWAHEC and Wake Forest School of Medicine.

1.  "The Impact of Fetal Alcohol Spectrum Disorders (FASD) in Substance Use Treatment" - November 30, 2021 - 10 am - 12:15 pm Eastern Time

Sign up link - www.northwestahec.org/66332

2.  "Improving Outcomes in Substance Use Treatment by Modifying Approaches for Individuals with FASD" - December 2, 2021 - 10 am - 12:15 pm Eastern Time

Sign up link - www.northwestahec.org/66771

 For more information-  if you have questions about registering, if you need auxiliary aids or special services to participate, please contact Gail Pawlik at [email protected] 

Dan Dubovsky, MSW -

https://www.linkedin.com/in/dan-dubovsky-761aa415/

FASD Hope -

https://www.fasdhope.com/

[email protected]

Instagram - https://www.instagram.com/fasdhope/

Facebook - https://www.facebook.com/fasdhope1

Twitter - https://twitter.com/fasdhope

LinkedIn- https://www.linkedin.com/in/natalie-vecchione-17212160/

Clubhouse - @natalievecc

Check out our new book “Blazing New Homeschool Trails: Educating and Launching Teens with Developmental Disabilities” by Natalie Vecchione & Cindy LaJoy  BUY IT NOW!