Susan Rose Enshrined in FASD Hall of Fame

For her commitment and determination to raise awareness of the risk of pregnancy and alcohol and to improve the lives of families touched by FASD, NOFAS inducts Susan Rose in the Tom and Linda Daschle FASD Hall of Fame. Established in 2005, the Hall of Fame was named for former U.S. Senator Tom Daschle and his wife Linda Hall Daschle as a tribute to their commitment and leadership in the fight to prevent alcohol-related birth defects.

As the adoptive mother of a child who has FAS, Susan Rose was so appalled that she could not find anyone in New York City who knew about fetal alcohol syndrome that she made it her mission to tackle the largest metropolitan area in the U.S.

That was the impetus for The Fetal Alcohol Syndrome Support Network of NYC and L.I., Inc. (FASSN). Since her skills from her ‘previous life’ included being an educator, writer, businesswoman, ‘one-time’ bureaucrat, music and stage director, and piano accompanist, Susan knew she needed a mentor to ‘take on City Hall’ and to create FASSN. Had it not been for the knowledge, encouragement, and guidance of Luther K. Robinson, M.D., Sandra Gangell (Robinson), and Divine intervention, FASSN would not have succeeded beyond any reasonable expectations.

Susan Rose is the founder and past president of FASSN. Her goal, which was to a great extent achieved, was to educate the commissioners of every New York City government agency, doctors at all the major hospitals, and the public, about prevention, identification and interventions of and for FASDs.

Perhaps one of Susan’s greatest gifts is in identifying and bringing together people to collaborate on major projects. Examples: the first FAS Conference in NYC at Columbia University with fellow collaborators, Margo Singer and Dianne O’Connor was a very successful collaboration between FASSN and the New York FAS Task Force. The first NYC seminar to educate lawyers and judges in NYC about FAS was made possible by her connecting one of the city’s largest law firms with the NYS FAS Task force. In another project, Susan and Dianne co-presented a 6-hour FAS training for all NYC’s Children’s Services’ (ACS) social workers. They also 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. Later, the presentation was placed online for anyone to download.

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’. Other projects worthy of mention: the last Commissioner of the Department of Health and Mental Hygiene of NYC that Susan educated about FAS is presently the Director of the Centers for Disease Control and Prevention (CDC). 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.

FASSN also started the first computerized FAS hotline in the U.S. The first callers were mostly social workers and those in the medical field. 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 to be able to identify the high-risk areas for planning purposes.

Another project, a slide show of pictures of children and young adults who have FASDs, was the first time a ‘face’ was put on FASDs. This slide- show 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 characteristics. Another education 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 was also able to help fine-tune the Nine-Zero project for health classes. For A.P. Biology classes, Susan used her grand round PowerPoint presentations that she used to educate doctors at hospitals. 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.

To make up for the lack of media coverage about FASDs, Susan wrote numerous articles for magazines and newspapers and arranged for television interviews. Within a few years, newspapers and television networks sought her out. The producer of ‘Law and Order’ contacted FASSN for an episode involving FAS. Major and local newspapers in NYC and L.I. did articles on FASSN, increasing awareness. One particular opportunity for an important article arose when Susan saw a hand-made sign over the beer section at Costco that read, “woman who are pregnant should avoid alcohol’. Susan immediately wrote corporate Costco to thank that store and used the opportunity to write something about FAS. “Corporate Costco replied to me and asked if I would write an article for their magazine about FAS.” Her magazine article appeared in every Costco magazine in every store in the U.S. with amazing feedback from its readership. Even someone at the CDC tweeted, “I now have another reason to love Costco.” Susan commented: ‘It is not easy to get that kind of wide-spread exposure about a hidden disorder.”

Unknown to all of Susan Rose’s colleagues is that FAS was a part of her life at the very start of her career before ‘FAS’ even had a name. In 1972, she 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 alcoholic mothers 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.

NOFAS and FASD advocates salute Susan Rose, and welcome her to the Tom and Linda Daschle FASD Hall of Fame.