Brian Burgin, Grand Island

President

Brian Burgin lives in Grand Island NY (Buffalo/Niagara region) with his wife, Lori, teenage daughter  Julianna (PWS) and our chocolate lab, Maizie.  Brian is currently a Staff Scientist with Thermofisher Scientific.  Brian has served with PWANY in various roles including board member, secretary, and vice-president and currently serving as President. Brian enjoys spending time with his family, the outdoors (hiking, kayaking etc.) traveling, volunteering and recently taken up beekeeping as a hobby.

Amy McDougall, Fulton

1st VP

Amy McDougall lives in Fulton with her husband, Harry, and younger children Noelle (19, PWS) and Logan (17). Amy has her Masters in School Psychology. During her professional career, she has worked with preschool through high school age students. Amy has served on the Board of PWANY for 15 years in a variety of roles and has presented at both state and national PWS conferences. In her “spare” time, Amy enjoys reading, playing soccer, and watching her children at their various activities (riding, dance, hockey, and lacrosse).

Cathryn Maczko, Vestal

2nd VP

Cathryn, husband John and youngest Tommy (16, PWS/UPD) live in Vestal, NY with 2 large dogs, 2 cats, 12 chickens and 3 peacocks 🙂 Tommy was the 3rd kid in the country to have MAGEC growing rods in his spine due to scoliosis. We use the ketogenic diet to significantly reduce Tommy’s seizures and have seen an 80% minimum reduction in intensity and frequency in two and a half years. Cathryn’s biggest dream is to build a Community for Tommy to live when he wants to ‘move out’. This vision is that this community would be home to not only special needs individuals, but perhaps their families would buy the home next door to the Loved One and always be near. Family is everything! Please feel free to contact Cathryn at Catt@maczkorealty.com if you have wonderful ideas to add, want to participate or if we can be of any service to you & yours! 

Elizabeth Bystrak, Orchard Park

Secretary

Liz Bystrak lives in Orchard Park, NY with her husband and two daughters. Her youngest daughter, Violet, has Prader-Willi Syndrome. Violet is currently 11 years old and is in sixth grade. Although Violet has a variety of medical, orthopedic, and some learning issues, with the proper supports in place, Violet is thriving!  Liz has worked in public education as a special education and reading teacher for over 20 years.  She’s taught students from early childhood, elementary, middle school, and high school, developing a solid understanding of childhood development and of our PK-12 educational system. Liz is currently a reading specialist at Orchard Park Middle School focusing on Orton Gillingham-based reading intervention.  She’s also taught in the Graduate School of Education at both Buffalo State and Medaille Colleges. In addition to the PWANY, Liz serves on the Board of Directors of the Niagra Frontier Reading Council. She is particularly interested in identifying and implementing reading interventions for students with reading-based disabilities.

Tammy Reals, Liverpool

Treasurer

Tammy is a loving mother of 4 amazing children, including one son with PWS. She lives in Liverpool and teaches math and science at Living Word Academy in Syracuse. Tammy has served on the PWANY board for many years. She enjoys traveling and spending time with her family. 

Rachel Johnson

Executive Director, Endicott (800) 442-1655
Email: alliance@prader-Willi.org

Rachel Johnson lives in Endicott with her husband, Shawn, Children, Eliana ( PWS )and Shayna, a trained Service Dog, Stanley, 2 cats and 3 guinea pigs. Rachel is a Math Teacher at Johnson City School District and has her Masters in Special Education. She started as a board member on the PWANY in 2010, served as President for a couple of years before becoming Executive Director. Rachel loves to run and spend time at her cottage in Perry and with her extended family in Rochester.

Nina Roberto, Queens Family Support Services Cooridnator
niroberto69@gmail.com 718-551-1623

Nina Roberto lives in Queens, NY, is the proud mother of 3, Niyani, Sonny (19 with PWS) and Lennon, and joyful grandmother of 4 Sonny is 19 with PWS. She has been a Parent Mentor, Crisis Counselor, served on the Publications Committee which resulted in a publication for siblings with PWS and as a translator for PWSAUSA.  She is in the first graduating class of the PWSAUSA WYATT Special Education Training Program.  She began as a Director, later became Executive Director, and is now the Director of Family Support for the PWANY. She is also the State-Wide PWS Family Support Services Coordinator through Catholic Charities and has been for the past 17 years. She’s holds PWS Support Groups throughout the state and serves as a valuable resource for parents and professionals needing support for our loved ones living with PWS. She has been recognized across NYS for her advocacies and was awarded Advocate of the Year from the NYS Department of Health.  She recently co-authored a PWS textbook with Dr. Deepan Singh and consults and collaborates with professionals throughout the PWS community. She enjoys going on long weekend escapes with her sons and spending time with her family. it’s the quality time with them that means the most to her. 

Jenny Andrews

Director

Jenny Andrews lives in Clayton with her husband, Jade, and their three children, Wyatt, Nora and Vivian (PWS). She is a Physical Therapist by day and a chaos coordinator by evening. She enjoys outdoor adventures, running and spending time with family. Jenny attended her first Prader-Willi Alliance of NY conference when Vivian was just a few months old. She hopes to be able to give back to a community that provided much support to her and her family in the early days and now.

Daniel Angiolillo

Director

Type Biography here

Elinor Baller, Larchmont

Director

Elinor Baller resides in Larchmont NY and in Delray Beach, FL.  Her daughter, Louise (PWS) is grown, living happily with four PW adults in a group home (run by Community Living Corporation) in Yorktown Heights, NY. .  Elinor is retired, after teaching English at White Plains H.S.   She has two other married children and six grandchildren.  Elinor teaches a writing seminar and remains active in Florida, enjoying tennis, golf, biking and trail walking.  Her involvement with PWANY as a board member goes back many years.

Michele Bell

Director

Michele Ricci Bell lives in Niskayuna with her husband, Jim and their delightful daughter, Iris, who has PWS. Michele is Associate Professor of German Studies at Union College, having earned her BA in Economics and German Studies at Columbia College, and her PhD in German Studies at Stanford University. Michele and her family have attended PWANY conferences as well as FPWR conferences since Iris’s diagnosis at age 6. Michele has also posted summaries of PW-related presentations for FPWR and has served as an advocate reviewer for FPWR’s research grant program. Michele enjoys travel, art, music and spending time with family and friends.

Jeannie Dickinson, Grand Island

Director

Type Biography here

Nancy Finegold, West Hempstead

Director

Nancy lives on Long Island in Nassau County. She has 3 adult children, including Daniel; Dina with PWS; and Sarah. She has had a long career working for the NYC DOE as a Supervisor of school psychologists and school social workers in two districts in Queens. Nancy has been involved with PWANY since she attended her first conference with her family in 1998 when her daughter Dina with PWS was only a baby. She has been a board member of PWANY since 2000. She has served as both secretary and vice-president. She is currently serving as a director. When she is not working, Nancy enjoys spending time with her family and friends.

Thomas Diep, Staten Island

Director

An active father of two with the oldest being diagnosed with PWS a few weeks after birth. I’d always believe in the paying it forward mantra and the giving back mentality, hence I run for causes if I am not training for a race. Outside of working in the corporate field and being on the advisory board of my alma mater, I enjoy being part of the Board. It is not just about being part of “friends and family,” but really a formalized community of people in vast geographic regions in the State of New York coming together trying to make an impact to change the quality of life and care for their PWS loved ones.     

Dan Maillet, Irvington

Director

Dan Maillet lives in Irvington, NY with Dorothy, his wife and Matt, his adult son with PWS /Autism.  Matt has an older dedicated sister who lives in Roslyn, VA.  Dan  has an MBA and was a Business Analytics consultant for many years.  He currently develops sales, marketing and finance dashboards for senior executives. His family loves exercise, travel and spending time with family and friends.  He is passionate about advocating for services for his son and the disabled community.

Barbara McManus, The Villages, Fl

Director

Susan Papaioannou, Merrick

Director

Susan Papaioannou lives in Merrick, Long Island, with her husband George.  They have two adult children, Maria (PWS) and John.  Susan is a retired elementary teacher of 37 years. She has a Masters Degree in Education.  She loves to spend time reading, going to the gym, traveling, and spending time with her family.

Amanda Yanik, Caledonia

Director

Amanda Yanik lives in Caledonia (between Rochester & Buffalo) with her husband, Daniel, and 3 kiddos, Judson (8), Maxwell (6), and Saoirse (4). She has her teaching degree and has been a Spanish teacher as well as a pre-k teacher in years past, although she currently stays at home to care for her children. She also shares her home with 3 cats, Desmond, Penny, and Lulu and a puppy named Opal. Amanda loves to run, advocate for her daughter Saoirse, write, and spend time with friends and family. 

Dr. Moris Angulo Medical & Scientific Advisor
Stacy Ward Provider Advisor