Collaboration Makes Hard Work, Work!

Red Shoes Rock honors the FASD pioneers –
What if person can change a city as big as New York City?
Susan Rose – Thank you!

Susan Rose, tackled the hidden
the white elephant in NYC and
her writing goes around the globe.

Susan Rose, (now retired) is the founder and past president of the Fetal Alcohol Syndrome Support Network of New York City and Long Island or FASSN for short.
Susan Rose, (now retired) is the founder and past president of the Fetal Alcohol Syndrome Support Network of New York City and Long Island or FASSN for short.

What do you do if you are the aunt of a child with Fetal Alcohol Spectrum Disorders, plus an educator, writer, stage director, bureaucrat and businesswoman? Did I mention pianist? And you muster all you have to find resources to help your special child—and you find—zilch—nada—none—in the largest metropolitan area in the whole USA—New York City!

If you are Susan Rose, you roll up your sleeves and begin The Fetal Alcohol Syndrome Support Network of NYC and Long Island, Inc. (FASSN). And you take on a mentor to ‘take on City Hall’ to create FASSN. Her goal was to educate every commissioner of every NYC government agency, the doctors of all major hospitals and the public about prevention, identification, and interventions of and for FASDs. Susan has the gift of collaboration, and she used it to make an impact.

Big projects often have small beginnings, and the dots to connect prenatal alcohol exposure to behaviors was on the forefront.

In 1972, Susan was appointed by Mayor White of Boston as Program Developer for the 50 teen centers located in the most impoverished areas/ projects of Boston. Her job was to assess the needs of these centers and then to develop appropriate programs.

By getting to know the counselors, parents, and their children, she made the connection between mothers with alcohol use disorders and their children who had specific facial and body traits and very disturbing behaviors.

Deeply concerned about this finding, Susan Rose brought this to the attention of the mayor who approved a study.

Susan’s early work made the difference in her next steps to build awareness for FASD.

With the knowledge, encouragement, and guidance of Luther K. Robinson, M.D., Sandra Gangell (Robinson), and Divine intervention, FASSN succeeded beyond any reasonable expectations.

FASSN started the first computerized FAS hotline in the U.S. with initial calls from social workers and medical professionals.

This hotline demonstrated the need for FASSN to research all the available resources in lower New York. These FAS resources were then listed on state and local websites. Because many of the callers were also from out-of-state, it was necessary for FASSN to connect with NOFAS and their affiliates to coordinate referrals. The computerized hotline also showed where the calls originated. This allowed FASSN the ability to identify the high-risk areas for planning purposes.

With fellow collaborators, Margo Singer and Dianne O’Connor, the first FAS Conference in NYC at Columbia University was very successful between FASSN and the New York FAS Task Force.

  • Susan and Dianne co-presented a 6-hour FAS training for all NYC’s Children’s Services’ (ACS) social workers. They created, for ACS, one of the most comprehensive PowerPoint presentations for this event that was given to all the social workers to train their own teams. Then the presentation was placed online for anyone to download.

Let’s educate lawyers and judges

The first NYC seminar to educate lawyers and judges in NYC about FAS was made possible when Susan connected one of the city’s largest law firms with the NYS FAS Taskforce. Susan’s collaboration with Kay Kelly and a Canadian lawyer resulted in her ‘FAS and the Law’ article that was published by the Queens Bar Association. This was another NYS ‘first’.

Sometimes it takes a 10-page letter

The last Commissioner of the Department of Health and Mental Hygiene of NYC that Susan educated about FAS became the Director of the Centers for Disease Control and Prevention (CDC) and acting administrator of the Agency for Toxic Substances and Disease Registry from 2009 to 2017. Susan’s first contact with Thomas Frieden, M.D. was met with his request for ‘brief’ answers to three questions. Susan replied with a 10-page letter with references. To Dr. Frieden’s credit, he read all 10 pages. Not too long after this exchange, Dr. Frieden was appointed to head the CDC.

Let’s put a face on FASD

Another project, a slideshow of pictures of children and young adults who have FASDs, was the first time a ‘face’ was put on FASDs. And for the first time the faces shared showed the bigger pictures of the spectrum of this disorder.   This slideshow has been used globally for educational purposes. The non-music version is particularly useful for grand rounds so doctors can observe FASDs with or without facial (sentinel) characteristics.

Note from Jodee — in Canada, FASD is now a diagnostic term

Whereas the 2005 guideline identified fetal alcohol spectrum disorder (FASD) as an umbrella term capturing specific diagnoses of FAS, pFAS, and ARND, under the 2015 guideline FASD is now a diagnostic term in Canada.

The new two Canadian diagnostic terms include:
1.    Fetal alcohol spectrum disorder with sentinel facial findings (i.e. short palpebral fissures, smooth philtrum, and thin upper lip, as associated with prenatal alcohol exposure)
2.    Fetal alcohol spectrum disorder with no sentinel facial findings

Fine tuning the Nine-Zero Project

Susan piloted ARC’s Nine-Zero Project in many New York City and L.I. High school districts to determine how best to raise FAS awareness in a city with such diversity. She fine-tuned the Nine-Zero project for health classes. For A.P. Biology classes, Susan used her hospital and doctor grand round PowerPoint presentation.

According to Susan, “I’ve never seen such an outburst of enthusiasm and shock from students. One male student stood up and pointedly asked, ‘why isn’t this taught in every school system?’”

Before starting a media campaign to inform the public about FAS, Susan first vetted physicians throughout NYC and L.I. Who could be listed as FAS diagnosticians? As a result, FASSN was able to refer parents and health professionals to physicians who are knowledgeable about the disorders. It was notable that most hospitals did not know who the FAS experts were on their staff, so this was a far more difficult process than expected. Since only one FAS psychologist was found in all of lower New York, Susan was given permission by the FAS Task Force to counsel parents about to raise children who have FASDs.

AND she wrote articles for magazines and newspapers.

Including an article in COSTCO! She arranged for television interviews, and it paid off. The producer of ‘Law and Order’ contacted FASSN for an episode involving FAS.

Is anyone tired yet of just reading what this dynamo accomplished—all the seeds she planted to be watered by the next generations of advocates, caregivers, and professionals.  

Thank you, Susan, from Red Shoes Rock “Job, well done!”



Published by jodeekulp

Jodee Kulp, is an award-winning author, producer and advocate who works tirelessly to serve children and families of Fetal Alcohol Spectrum Disorders (FASD). Her behavioral work in understanding canine fear and applying it to helping adults gain life skills is momumental and parallels our work with EAGALA Equine Therapy. It will be exciting to watch this progress. - Chris Troutt, Papillion Center Current Projects include: Pearlz Work Embraced Movement PraiseMoves LIFT (Laughter in Fitness Training) LiveAbilities Red Shoes Rock. Stop FASD PawZup Life Stories

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