Who we are
The PPDB was created to help people who are deafblind and their families make these connections and support each other. PPDB is a federally-approved 501(c)(3) non-profit corporation. We have been legally incorporated in the Commonwealth of Pennsylvania since October 2007 and all contributions to PPDB are tax deductible.
The PPDB is a family-led organization governed by a Board of Directors. Our members set the organization’s priorities with an agenda to serve the needs of the families connected to us, and educate public officials on issues involving deafblindness. Most of our members are parents of children with deafblindness.
PPDB was honored to be selected as the first State Affiliate of the National Family Association for Deaf-Blind (NFADB). PPDB also has a close partnership with the PA Deaf-Blind Project, which has provided support, assistance, training and encouragement.
The PPDB is a family-led organization governed by a Board of Directors. Our members set the organization’s priorities with an agenda to serve the needs of the families connected to us, and educate public officials on issues involving deafblindness. Most of our members are parents of children with deafblindness.
PPDB was honored to be selected as the first State Affiliate of the National Family Association for Deaf-Blind (NFADB). PPDB also has a close partnership with the PA Deaf-Blind Project, which has provided support, assistance, training and encouragement.
About DeafBlindness
In Pennsylvania, there are approximately 600 children (birth to 21) who are deaf-blind. There is no reliable census of the number of adults with deafblindness, although some estimates put the number between 1,000 and 3,000.
Deafblindness is not merely the loss or impairment of two senses (1+1 does not equal 2). As Helen Keller stated, “Blindness cuts you off from things; deafness cuts you off from people.” In addition, approximately 80% of children who are deafblind have at least one other disability or health condition that affects their lives.
When a small population of people with unique, and often complicated, needs is spread throughout such a geographically large state as Pennsylvania, it is very difficult for these individuals and their families to identify, talk to, and learn from people in similar situations.
Deafblindness is not merely the loss or impairment of two senses (1+1 does not equal 2). As Helen Keller stated, “Blindness cuts you off from things; deafness cuts you off from people.” In addition, approximately 80% of children who are deafblind have at least one other disability or health condition that affects their lives.
When a small population of people with unique, and often complicated, needs is spread throughout such a geographically large state as Pennsylvania, it is very difficult for these individuals and their families to identify, talk to, and learn from people in similar situations.
Board of Directors
Officers
Lisa Lopatofsky
President lopatofsky.lisam@papdb.org Lisa lives in Waymart with her husband and four daughters. Her two oldest have Usher Syndrome 1b. Lisa is a Parent Mentor with Family Connections for Language and Learning, a Peer Supporter with Parent to Parent of PA and the PA Ambassador for the Usher Syndrome Coalition. She is also a member of the PA Deaf-Blind Advisory Committee and the NEPA Professional Learning Community, as well as a NFADB Board Member, the PPDB Affiliate Liaison for NFADB, and a member of NFADB's PIE Committee. 
Molly Black
Vice President 724-863-1283 mblack@pattan.net Molly rejoined the Board in order to work alongside other passionate parents in the DeafBlind community. She lives in Irwin, a suburb east of Pittsburgh with her husband. Molly and her husband raised two grown daughters and raised a son who lived 22 years with Cornelia de Lange Syndrome, the cause of his deaf-blindness. For many years Molly has worked as a Family Consultant with the PA DeafBlind project. She’s focused on supporting families and school teams in secondary transition planning. 
Sandra Schiffli-Salerno
Secretary iusandra@live.com Sandra lives in Lancaster County, PA with her husband and three daughters. Her middle daughter experiences deaf blindness as a result of congenital cytomegalovirus. Sandra received a Bachelors of Finance degree at Indiana University and an MBA from Florida International University. She is passionate about understanding the complicated challenges and triumphs her child and others face as a individuals with deaf-blindness 
Gordon Boe
Treasurer g.boe@comcast.net Gordon lives in North Wales, about 25 miles west of Philadelphia. He and his wife Mary raised their granddaughter, Brittany, who was DeafBlind. Brittany had many health issues, including a kidney transplant, asthma and allergies. She passed away in her sleep in July 2019 at 26 years old. Mary died 16 months later. Gordon helped co-found PPDB and served as President for 6 years. He then took a sabbatical, and rejoined the Board. Even though Brittany can longer benefit from the progress we make through PPDB, Gordon is as passionate as ever about the need for parents and family members to share experiences, insights, triumphs and challenges. When we lean on each other, we find that we have a better chance to improve the little piece of the world that our children and families inhabit.
Juli Baumgarner
724-674-0075 julibaumgarner@gmail.com Juli is a school psychologist for the (Ohio) Mahoning County Educational Service Center. She was a consultant and coordinator for the PA Deafblind Initiative for over 21 years. Juli continues her involvement with the deafblind community as a PPDB board member and sibling group facilitator at deafblind family conferences. She lives near New Castle, PA. 
Beth Foster
bethf@papdb.org Dr. Elizabeth (Beth) Foster, Ph.D. is an associate professor at West Chester University, PA in adapted physical activity/education (APA/E). She is the APA/E program coordinator and graduate coordinator of the APE graduate certificate program. She is currently the director for Camp Abilities in Pennsylvania, which is a developmental sports camp for youth with vision loss. Dr. Foster has presented internationally and nationally at conferences on research and various application-based topics on vision loss/deafblindness, adaptations, and assessment within the field of APA/E and adapted sports. She completed intervener training at the Minnesota Deafblind Project. Dr. Foster was named the 2012 Pennsylvania State Association for Health, Physical Education, Recreation, and Dance APE teacher of the year. In addition, Dr. Foster has been involved with various adapted sport organizations and disability organizations promoting physical activities, fitness, adapted sports, and aquatics for all individuals with disabilities. She is currently a member of the Pennsylvania Deaf-Blind Advisory Committee. |
Board Members
Dixie Stachnik
djfagaly@gmail.com Dixie lives in Malvern in Chester County, PA with her husband and 2 boys. Her oldest son has Usher Syndrome 2A. She is looking forward to the opportunity to be a part of the PPDB, and to help other families. 
Johnine Bickauskus
johninemail@gmail.com Johnine lives in Jefferson Township with her husband Darryl, daughter Kayla and son Kase. Her son Kase is deafblind due to a brain malformation Polymicrogyria of the bilateral frontal lobes. Johnine is also a member of NEPA Professional Learning Community and The Ballet Theater of Scranton. 
Julia Murray
jamurray0720@gmail.com Julia lives in Pittsburgh, PA with her family. She is an eighteen year old that is deafblind. She was diagnosed with cone-rod dystrophy and bilateral sensorineural hearing loss. She received her right cochlear implant when she was two and her left when was three. As a current senior at Baldwin High School, she is a part of the National Honors Society board, Blind Ice Hockey team, and Three Rivers Rowing Adaptive club. 
Meghan Meyers
meghano220@yahoo.com Meghan lives in Lancaster County, PA with her husband Chris and son Brian. Brian experiences deafblindness as a result of Peroxisomal Biogenesis Disorder. Meghan received a Bachelors of Arts from the University of Delaware and her Nursing Degree from Pennsylvania School of Health Sciences. Meghan currently is an Infection Preventionist and Patient Advocate in an acute behavioral health hospital. She is passionate about understanding the complicated challenges and triumphs her child and others face as an individuals with deaf-blindness. Meghan also sits on the board of the GFPD (Global Foundation for Peroxisomal Disorders). 
Jessica Coffin
Jessicamariecoffin@gmail.com Jessica lives in Collegeville, PA with her husband, David, and son, Noah. Noah has Usher Syndrome 1b, which contributes to his DeafBlindness, as well as Autism Spectrum Disorder. Jessica is an attorney and has spent her career representing clients in the energy sector. Her advocacy skills have come in handy as she has worked to ensure Noah has the supports he needs, and she is hoping to be able to similarly help other families. 
Kristina Kezmarsky
kmkezmarsky@gmail.com Kristina received her BA in Law and Society from Penn State University and works as a paralegal in the child welfare field. Kristina and her son live in the Pittsburgh area. Her son experiences deafblindness due to Cornelia de Lange Syndrome. Her son is a teenager and will be looking to transition in the next few years. Kristina is a fierce advocate for her son and his needs. Kristina is a former Board Member and is returning to continue the advocacy efforts of PPDB. 
Danielle Cieply
daniellec@papdb.org Danielle lives in Pittsburgh with her husband and two boys. Her oldest son has Goldenhar Syndrome. Danielle is a Parent Mentor with Family Connections for Language and Learning. She is also a board member of AG Bell and the Heart Center Family Advisory board of Children's Hospital of Pittsburgh. 
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