Meet SAFA's Founding Members
SAFA has 21 founding members from the following states: Alaska, Arizona, California, Colorado, Florida, Illinois, Montana, Michigan, Nevada, New Hampshire, New Jersey, Pennsylvania, South Carolina, Tennessee, Texas, Washington, Ohio, Minnesota. Age of membership ranges from 18 to 52.
Jasmine, past SAFA Project Coordinator
Rob, past SAFA Project Coordinator
SAFA's Founding Members
Alicia was prenatally exposed to both alcohol and marijuana, and probably other drugs. When she started school, she was diagnosed with dyslexia and put in Special Education. She received several types of therapy most of her childhood and remained in Special Education through college, which she completed. She graduated in Criminal Justice and is currently a Probation Officer specializing in Victim Advocacy. Back to top.
My name is Amanda, I am 19 years and am from Nevada. When I was 20 months old my birth mother placed me and my 8 month old sister into foster care so she could enter rehabilitation. We were in the first foster home for 2 months. The foster parents said it was too hard to care of us. It was then decided that I should be placed in a home for children with intellectual disabilities. My foster mother was told they have no place for me because of all my special issues. But my foster mom told them "I'll keep her." In March 2009 I was adopted by her. When I entered Early Childhood Education my foster mom was told they didn't think I would ever learn to read or write. In 2011 I graduated high school with an adjusted diploma. I had all my credits but did not pass all of my proficiency tests. I choose to return to high school to pass my tests. So I have passed all but one, and I will soon pass it. Even with the challenges she faced, I chose to live the life others said wouldn’t be possible. I can't step out of my body and say I’m tired if living this way. My goal is to educate others about the dangers of drinking alcohol while pregnant. My life motto is "you can slow me down but you can't stop me.” Back to top.
Marlene (Anna) has worked at the Center for Human Development (the University Center for Excellence in Developmental Disabilities) for 10 years and has been a member of the Governor’s Council on Disabilities and Special Education (The Council on Developmental Disabilities) for 10 years. Anna was born and raised in Alaska. Her mom drank when she was pregnant with Anna which caused Anna to have FASD and attend special education classes in school. Today, Anna is proud to be a strong Self Advocate for her state. She joined The SAFA network to keep speaking up for herself, those with FASD in her state, and to help other people with FASDs learn how to speak up for themselves. She especially wants to help Alaska native people, woman, and people who live in rural places. Anna brings a strong history of leadership skills through her work with the Rural ad hoc committee for the Governor’s Council on Disabilities and Special Education. Anna has been practicing self-advocacy since 1987 and is honored to be a member of SAFA. Back to top.
Shawnee Community College student Emily of Belknap was named second runner-up during the Miss Illinois County Fair queen pageant and earned the honor to join the other 65 contestants in the pageant when she was crowned Miss Williamson County Fair Queen 2010. Emily is currently pursuing degrees in Spanish linguistics and Christian Psychology. She plans to use her academic training to reach out to Hispanic communities. As the president of the SCC Spanish Club, she leads other club members in helping to promote greater interaction among Spanish language students and others. Emily is not new to the stage; in 2008, Emily was crowned Miss Illinois Outstanding Teen. She is a supporter of the National Organization of Fetal Alcohol Syndrome, speaking out for action to eliminate birth defects caused by alcohol consumption during pregnancy. She is also a proud member of SAFA (Self-Advocates with FASD in Action). She travels and speak often to promote public awareness about the risks of alcohol consumption during pregnancy, with the goal to reduce the number of babies being born with Fetal Alcohol Spectrum Disorders. Back to top.
“My name is Erin, and I am an adult with Fetal Alcohol Syndrome. And this is why my jewelry is made the way it is. The reason why there are wrong colored beads in my jewelry is to show that I may look perfect on the outside but on the inside I’m not. Let me tell you a little bit of my story. A few summers ago while watching TV with my mom a commercial came on for a show called “I didn’t know I was pregnant” and my mom said I know your old enough to know this now, but your birth mom didn’t know she was pregnant with you, due to all the years she had been drinking. It took me days, even weeks to process this, I really didn’t know how to feel. I had two choices, one to be angry and wonder why God didn’t let her know she was pregnant with me, so maybe she would stop. Or consider my life a miracle, and thank God for protecting me the months I was in her. So that’s what I chose. God is amazing. I have had many difficulties growing up with FAS. The learning aspect and the social aspect has been hard due to the effects of prenatal exposure to alcohol. I was born blind in my right eye and am unable to drive because of it. But that hasn’t stopped me from accomplishing other things like making and selling my jewelry! I am proud to be a SAFA member and help others with FASD like me!” Back to top.
Jasmine (past SAFA Project Coordinator)
Jasmine is the 20 year old daughter of Dianne and Mickey. Dianne works part-time in the OASAS Prevention Services Bureau in Albany on a statewide FASD prevention initiative called Project CHOICES. Jasmine was diagnosed with Fetal Alcohol Effects (FAE) when she was three years old. With many supports, Jasmine graduated Scotia-Glenville High School in June 2008. Along with her mother and older sister, Jasmine was an opening plenary speaker, for the “Sharing Personal Stories” panel at the annual 2008 Building FASD State Systems national meeting. In 2009, Jasmine and her mother Dianne were featured in a Patient Education Video produced by the American Congress of Gynecologists and Obstetricians (ACOG) of NYS. This video has been viewed in hospitals and medical settings across the United States in over 1,000 locations. Back to top.
In 2009, Jasmine was nominated for a seat on the SAMHSA FASD Center for Excellence FASD Expert Panel. The role of the Expert Panel is to provide oversight, advice, and guidance to the Center based on the member’s professional expertise and/or personal experience with FASD. Jasmine brings her voice to the Expert Panel on how FASD has affected her life, finding ways to help families and caregivers living with FASD lead successful lives, and getting the word out to the college population about alcohol use and pregnancy.
Jasmine helped launched the national “Self Advocates with FASD in Action” (SAFA) group. Jasmine helped to plan the first-ever conference by and for individuals with an FASD during the 2011 Building FASD State Systems meeting. This past year Jasmine was nominated by the FASD Center for Excellence to take part in the development of a Treatment Improvement Protocol (TIP) to be titled Addressing Fetal Alcohol Spectrum Disorders (FASD). This publication will be issued by the Center for Substance Abuse Prevention (CSAP) in early 2012. Jasmine currently co-presents with her mother at various conferences, training workshops, and advocacy sessions across NY. In 2010, Jasmine was featured by the National Organization on Fetal Alcohol Syndrome (NOFAS) about her experiences, in their series “Get to Know Me: My Life with FASD. Back to top.
Jean is Co-President for The Pennhurst Memorial and Preservation Alliance. A long-time self-advocate and a force within the disability rights movement, Jean has experienced the trauma of institutionalization first-hand. Encouraged by advocates and friends, Jean moved out to assisted living arrangements in 1984, with the help of an agency in Philadelphia. Jean has been employed with both the Public Interest Law Center of Philadelphia (PILCOP) and the Disability Rights Network of Pennsylvania, where she has been for 18 years. Believing it is imperative that the lessons embodied in the Pennhurst campus remain as an example for the future, Jean has become a driving force within the Pennhurst Memorial and Preservation Alliance. Jean discovered SAFA while they were exhibiting at a TASH conference she attended, and now is becoming an important voice for the FASD self-advocacy movement. Although her focus has been on deinstitutionalization, given her situation of being raised in institutions, she also wants to lend her voice and passion to issues facing people with FASD and believes SAFA is the perfect place to join with others in this shared cause. Back to top.
John is a drummer, an actor, a speaker, and a landscaper. He has played the drums in the church band for almost 10 years. He has worked as a landscaper at a desert plant nursery for 13 years. He had the lead role in the educational video "FAS: Everybody's Baby" produced for teens by teens. And he speaks about what it's like to have Fetal Alcohol Syndrome and how he has overcome many challenges to find success as an adult. John is an active member of the Arc of Tucson, was a member of the local board on developmental disabilities, and is a founding member of Club COSTA, a local self-advocate group in Southern Arizona. He loves bagpipe music (and is learning to play the bagpipes) and he collects power tools (like cordless drills, leaf blowers and weed whackers). He has a YouTube channel - TriLevelMan. Look him up and you will learn why he chose that nickname. Back to top.
"My name is Melissa (Lissie) or my Assiniboine given name, Eya Be Washday Weya (Good Words Woman). I am a Gros Ventre (pronounced Grow Vont) Assiniboine Native American from Fort Belknap Reservation and now live in Great Falls, MT. I am also an associate member of the Sisters of Humility of Davenport, IA. I was born in Havre, MT on Nov 5, 1976 and am one of the first diagnosed children with Fetal Alcohol Syndrome (FAS) in the state of Montana. I graduated from CMR High School in 1996 and Secondary Life Skills in 1998. I am now the proud owner of Lissie's Luv Yums, a gourmet dog biscuit business. My mission is to educate others about FAS and give hope to others. My support person or foster mom is Sister Johnelle Howanach who is a Sister of Humility of Davenport, Iowa. She is my job support specialist for my business and assists me in my daily living. I have been a member of SAFA since it first started about a year ago." Back to top.
Nick is a self-advocate with intellectual and developmental disabilities who participates in the life of the community. He has been a Lector at English Mass, he is a member of the Knights of Columbus, and he sings in the Choir at All Saints Catholic Church. Nick volunteers in the St. Vincent DePaul Food Pantry and helps Spanish speaking clients when needed. He is a member of The Arc of Greater Houston and has participated in the self-advocates’ meetings. Nick has been a presenter (alone or in a team) at various conferences on how students with disabilities can prepare for “Transition from School to Life” and “Using Public Transportation,” among other topics. Nick was featured in a video on prevention of FASD that was distributed in WIC Clinics all over Texas.
He likes speaking about being a part of the community in work, home life, worship, and recreation. He believes that all children and people with disabilities can lead full and productive lives in the community as they pursue their own endeavors with help and support of family, friends, and co-workers. Nick has volunteered at Texas Children’s Hospital at first serving snow cones when he was 15 yrs old and later when he was 21 in the office helping with mail outs. He has had full-time and part-time employment experiences starting at AstroWorld, Kroger, Baylor College of Medicine, and at Continental Airlines to name a few. He has received job-coaching and employment supports through Goodwill Industries, Inc., The Center, MHMRA, and DARS.
Nick received Special Education Services at Reagan Sr. High School in HISD continuing beyond the senior year. The school district paid his classes at Houston Community College in the VAST Program for individuals with cognitive disabilities. He received his VAST Certificate and High School Diploma in June 2003. Nick obtained his driver’s permit but prefers to use public transportation. He attends meetings, visits libraries, museums, concerts, and events by bus or rail. Nick enjoys traveling to strengthen his faith and has traveled to Lourdes, France sponsored as a Malade by the Knights of Malta with support from his faith family at All Saints Church. In 2011 he traveled to San Ramon, Costa Rica alongside pilgrims from All Saints Church, and looks forward to his next adventure! Back to top.
Nicholas is 18 years old. He has had challenges all his life but learned at the age of 15 that his mood disorder, ADHD, PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified), auditory processing disorder, and sensory processing disorder were probably due to the alcohol use of his birth mother in pregnancy thus receiving a FAS diagnosis. Nicholas’ birth mother had a history of alcoholism as a teenager. He is in college prep classes and hopes to graduate from high school in late May 2012. He plans to pursue courses in sound engineering with the assistance of State Vocational Rehabilitation. Nicholas joined SAFA to talk with others who are in his situation and "to tell others about the good things about having FASD." Back to top.
Patrick is 47 and lives in Stoughton, Wisconsin. His past employment history includes manufacturing aluminum for cars and motorcycles; candy making for five years, driving and delivering auto glass, and tree trimming. Patrick’s hobbies include restoring old cars, rebuilding engines, car maintenance, bike riding, walking, playing with dogs and cats, and listening to music. His personal goal is to find employment in driving freight or delivery, and he would also like to find someoane to spend his life with. His goal with SAFA is to become more involved informing people about FASD, and going to future SAFA events to meet others.
Being a person with an FASD, Patrick understands the difficulties with life, and how this is 100% preventable. He wants to be involved with SAFA because its main goal is to help those with an FASD diagnosis. Patrick attended the Building FASD State Systems conference in Washington, D.C., and would like more training on how to talk with others about FASD. Currently, he is working on taping discussions with a doctor in the field, in hopes of teaching medical professionals more about FASD. Back to top.
Patrick S. was born on March 17, 1973 and was diagnosed with FAS in 1976 in Hanover, NH. Patrick is the owner of a small dog bone business Pat's Bars in a Jar which he and his staff have managed for the last three years. Patrick is an advocate on behalf of Fetal Alcohol Spectrum Disorders, has done joint presentations with his mother to college students and the professional community. He recently served on a panel of adults with FASD for the NOFAS NH planning meeting, Success and sustainability through Collaboration 2011. Patrick sent Christmas cards to the other individuals he met on the panel to reinforce a mutually supportive relationship. Patrick likes the idea of advocating on behalf of prevention and as the son of the founder of NOFAS NH is in a position to meet and greet other individuals with FASD as they become identified through our network. Ideas coming from SAFA are so important in expanding these relationships in NH. He had these closing words for one of the NOFAS meetings recently, "Mothers, drink milk, not alcohol, babies love milk. Blessed be all women." Back to top.
Paul is 52 years old, and has been diagnosed with organic brain damage, and fetal alcohol syndrome (FAS). Paul lives in a group home in Tennessee. He has many gifts, including being an artist, and a musician. He plays bass, and often appears with his brother, John McAndrew, in concerts near Nashville, and around the country. Paul’s brother, John, is a recording artist, and Paul travels with John whenever possible, and often will perform with his brother on stage. It is a very inspiring moment when Paul performs 0 his joy and musical skill and competency are evident. He feels ten feet tall! Paul's is a common story in the fetal alcohol context. He experienced trouble early in his school years, attended special education classes, then finally dropped out. His family just didn't know what to do. He developed agoraphobia in his late teens, and went down hill from there. He eventually moved from his home with his mother and sister in Pennsylvania, and now lives in Nashville near his brother John. John McAndrew’s music can be found at www.johnmcandrew.com and Paul and his brother John are on YouTube as well. Paul is a welcome addition to SAFA, bringing his joy for life and love for music! Back to top.
"Hi. My name is Richard. I am 21 years old. I love to hunt, fish, be outside, and spend time with family and friends. I also live with fetal alcohol syndrome disorder every day, not only my own, but that of my brothers and sisters. I have seven biological siblings, most of whom are affected by FASD. I’ve been adopted for 13 years by the two most wonderful people in the world and am the first male in my biological family not to be in prison or have had anything to do with the corrections facilities. Here are some of the supports making my life possible:
- First and foremost, my family – my parents, grandparents and oldest sister Vicki.
- I have been blessed with the most understanding and competent teachers. The transitions program and vocational rehab has given me the opportunity to have hands-on job training skills.
- My psychiatrist has helped me be more stable and functional with my medications.
- My PCAs, who have taught me a lot of living skills, community skills, and have been there for fun too.
- My doctor who has cared for me for the past 13 years to make sure I was healthy and safe.
- My foster parents who cared for me when I felt unwanted.
- Dr. Chang, who diagnosed me and has helped me learn about how to improve my life living with FASD.
- MOFAS (Michigan Organization on Fetal Alcohol Syndrome) which has given me the opportunity to share my story with so many people so that I could help people living with or taking care of someone living with fetal alcohol spectrum disorder, as well as teaching me more about my disability so I could rise up and be the best I could be.
- My therapist who has worked with me on accepting my disability so I could be who I am today.
- Last but not least, all those who have come together to support all of us with disabilities as a community, and who loves, cares about and sacrifices time to make a difference. Because of you, I am as successful as I am and believe that we all, together, can and will make a difference in the lives of people with FASD."
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Ricki is a 34 year old “tall, dark and handsome” man who is very outgoing and friendly. His maternal birth grandparents were professional musicians and he has inherited their interest in music, one of his expert subjects. He marries his skills with people and with music into a DJ profession, at which he is quite good!! He usually has several performances each month. He was heavily exposed to alcohol and has the typical deficits that result from that kind of brain damage. He works every day with his support persons to provide him with the accommodations he needs to be as independent as possible and be successful. In his DJ business, he speaks to his audience frequently to raise their spirits and entertain. His natural gifts and this experience gives him extra poise and confidence as a self advocate. He and his support person and adoptive mother, Eva, have spoken together about FASD for many years before diverse groups both large and small, from professionals of every kind to children, educating them about fetal alcohol spectrum disorders and the impact it has on his life. His style is naturally uplifting and optimistic, and he would rather talk about his gifts than his deficits. Back to top.
Rob (past SAFA Project Coordinator)
Rob was the first infant diagnosed with FAS in Michigan, in 1973. Having a diagnosis at birth has been extremely helpful to both Rob and his parents. Although there were no conferences or books or videos on FAS in 1973, having the diagnosis helped his parents think and parent differently. As Rob grew older he wanted to become part of the solution of the FASD puzzle. He has been involved in the areas of prevention as well as intervention. His bumper stickers patterened after bus signs in Seattle have found their way to Capetown, South Africa, and Paris, France as well as all 50 states. He was also featured on the video “Students Like Me”. He was on a national committee, NAG (National Advocacy Group) for Justice, to help individuals with disabilities understand their rights in the criminal justice system. He does trainings, for peers, based on their project, “The Right Rules”. As SAFA (Self-Advocates with FASD in Action) Project Coordinator, he assisted in planning the first ever conference by and for Individuals with an FASD. He was also a presenter. In May he spoke at the FASD Center for Excellence, Building State Systems conference and recently attended his first steering committee meeting for the FASD Center for Excellence, under SAMHSA. He is the first person with an FASD to be on a national committee for FASD. Back to top.
"My name is Sarah. I am 30 years old. I own my own home. I have had it for five years this August 2012. I live with my special little rat terrier dog, her name is Juno. She means the world to me. I live in Toledo, Ohio. I am the Ohio representative with an FASD for the Ohio FASD Steering Team. I am part of the SAFA team because I want to educate people on FASD. So far I have done several things in Toledo. I started a young adult group for individuals with FASD. That was my major accomplishment. I participated in the FASD vendor booth for the ADA Day at the Zoo. I've also spoke at several conferences in Ohio. I work part-time as a scanner at Anne Grady. I have a variety of things I like to do, like going to the movies, playing with my dog Juno, going out to eat. I like camping, swimming, beaches, going to theaters to see plays, musicals, and gospel concerts. One of favorite things though is going to dog events. I am a dog lover!" Back to top.
Seth is 23 years old and from Florida. He spoke eloquently about his experiences and dreams for the future at the last Building FASD State Systems Conference in Arlington, VA on May 2012. He spent the first four months of his life in a Harlem hospital due to his mother drinking during alcohol during pregnancy. At age 3, Seth was totally out of control, all of the therapeutic interventions that had worked for many of the children with FAS did not work for him. At age 4 his parents adopted him, and his adoptive mother learned that out of all the other legal and illegal drugs combined, alcohol has the most devastating, long-term developmental impact which resulted in permanent brain damage for Seth. Even so, his family would not believe they could do nothing to impact the brain damage and explored every conceivable intervention that might improve his level of functioning, the most important being occupational therapy to treat his severe sensory processing problems. At 19 he attended Oak Park School, which accommodates children and young adults with severe challenges, and worked in the community 3 days a week. Seth is an amazing young man, full of hope that is absolutely contagious. He is an incredible addition to the SAFA Network. Back to top.
Tessa is the vice president of NOFAS Washington and graduated in 2011 from Henry M Jackson high school in Mill Creek, WA. She has volunteered for Special Olympics as assistant coach for the past three years. She is a contracted provider for the Division of Development Disabilities and works as a Medicaid Personal Care provider for children with Developmental Disabilities. She has been the sign language interpretor at a summer camp for young girl with who is deaf and has FAS. She was one of the original group of teens who, for the past 6 years, has been part of the social skills group for teens affected by prenatal alcohol exposure that is run by NOFAS Washington and she is a member of SAFA (Self Advocates with FASD in Action), which she enjoys very much. She presents on FASD as well as Tools for Public Speaking. Her goals are to take some additional online college classes this fall and perhaps work on a sign language degree. She enjoys music, watching movies, traveling and archery. Back to top.
“My name is Anthony, but I mostly go by Tony. I am 26 years old and I live in the woods in the state of Michigan. I am told I have a great smile, killer red hair, and I have eyes that are blue. After completing my credits for high school I attended a great transition school for several years. While there I had different job sites, learned many daily and life skills, spent time socially with my peers experiencing our community in adult ways, worked in our school Goodwill store and volunteered in our community at places that were in need of or help. Always being protected by very helpful staff. I was hired into Perkins Bakery and Restaurant, however very soon after I was employed all of the branches closed because of bankruptcy.
I quickly found 2 volunteer jobs, one at our local community center which helps families in need. The second at an assisted living center where I had visited my great aunt many times. Presently I am at the living center 2 days a week which I enjoy and am liked very much by the residents. They call me their red headed boy. I have trained in the food area and am hoping for part-time employment in their kitchen. Most of my job sites were working with food. Things that make me Tony are: enjoying spending time with a few of my good friends, listening to music (a wide variety of artists), going to movies (anything action, sci-fi, adventure and I really enjoy comedies), and volunteering. I play basketball and softball with my Special Olympics teams. We won the Basketball State Final in 2012 and are currently in the middle of softball with a 4-0 streak! I also bowl on a weekly league for 6 months with three of my friends. Music has always been a very important part of who I am. It gives me a place to go when I need to settle myself. I spend time with Miranda, my music therapist, weekly. We play guitar and piano, and sometimes just JAM with lots of different sounds. I sang “Find Love” at our last recital. I enjoy art like sketching and using colors to express my ideas and feelings. NOFAS used one of my designs on their 2012 Christmas card. I also designed a t-shirt logo, my way to advocate to prevent FASD. This is my message: I wish I could go back in time to when my birth mother was going to take that first sip of alcohol. I would push the freeze frame button and replace the glass of alcohol with my message in a bottle - PLEASE THINK BEFORE YOU DRINK. Life with FASD is difficult, scary and forever. PLEASE THINK BEFORE YOU DRINK.
One part of me that I haven’t talked about yet is being born exposed to alcohol, mostly this affected by brain and growth. In the past 4 years I finally grew much taller and weigh more, however my brain still works very differently than most people. Because of my poor memory, I have to ask for help because I forget what comes next. I do best with lots of structure but I don’t like schedules. I need a lot of help keeping myself SAFE because my judgment and reasoning often can put me in danger without me knowing it. I can be very easily confused when people talk too fast or ask me too many questions. When I feel pressured I may give an answer, right or wrong, just to try to make things ok.
In the past I have done a few presentations on FASD at conferences and parent support groups. Also I participate in the Michigan FASD Task Force and have helped with a number of local projects and am part of our area SAFA group. My involvement in the above allows me to tell my story while sharing what life with this diagnosis means in real life and continues my journey to be my own self-advocate. Continuing and increasing this is an ongoing goal of mine; I need more experience in public speaking.
All of the above along with being part of the National SAFA group has been helpful to me personally because letting others know what my life is like has given me a bigger voice. Sharing with other SAFA members has brought me joy and happiness. There is comfort in our SAFA group unlike any other even when we are apart because I know you are out there. Hearing about the journeys that other SAFA members have taken throughout their lives and how they have made a difference is one of the best parts of SAFA for me.
The goals I have regarding SAFA and especially for myself include staying better organized and responsive to requests for information from SAFA and try to communicate more often with SAFA members to see how they are doing. I am hoping to put together a short presentation to use in our local middle and high school health classes, using the DVD title An Ounce of Prevention. Also, while I really like my volunteer work, I would like to get hired part time.” Back to top.