April's  E-Perspective Newsletter
Making Connections with Support from the Office of Family Initiatives
By Stefanie Izzi

On November 13th, 2017, our daughter Sofia, was officially diagnosed with a very rare genetic disorder, called Pitt Hopkins Syndrome. Pitt Hopkins is a neurological disorder affecting about 1,000 individuals worldwide. At the time of her diagnosis, Sofia was one of only 14 cases confirmed in Massachusetts.

Through social media, we began connecting with other families whose children have Pitt Hopkins around the world. We quickly learned about the Pitt Hopkins Research Foundation Conference held in Minnesota, in June 2018. 

After learning about the conference, we knew we had to attend. Our lives changed in an instant when we received Sofia's diagnosis; including the financial impacts.  We knew that we needed to find a way to make it work.  It was important for us to educate ourselves, learn from professionals, and most importantly meet families who were on the same journey as we are.

Luckily, we began to learn about different funding options including some support that was available through the Department of Public Health Office of Family Initiatives. We will forever be thankful that we received funds to help with the travel expenses of attending this Conference.

The Pitt Hopkins Research Foundation Conference was life changing for our family. We attended meetings on communication, everyday struggles of Pitt Hopkins, planning for the future, mom/dad breakout sessions, research towards a cure, and much more!

We are grateful for the generous support we were given. We learned a great deal, but most importantly, we created lifelong friendships with those who have family members with Pitt Hopkins from around the world.

One of the many lessons I have learned this year is, ask. Do not be afraid to ask for help. There are benefits available for families just like ours, so keep on asking!  
Haciendo conexión a través del apoyo de la Oficina de Iniciativas para las Familias
Por Stefanie Izzi

El día 13 de noviembre de 2017, a nuestra hija Sofía le diagnosticaron oficialmente un desorden genético muy poco frecuente, llamado Síndrome de Pitt Hopkins. Pitt Hopkins es un desorden neurológico que afecta a unas de 1.000 personas en todo el mundo. Al momento de su diagnóstico, Sofía era uno de los 14 casos confirmados en Massachusetts.

A través de las redes sociales, comenzamos a conectarnos con otras familias de todo el mundo cuyos niños tienen Pitt Hopkins. Rápidamente supimos sobre la Conferencia de la Fundación de Investigación de Pitt Hopkins en Minnesota prevista para junio de 2018. 

Al enterarnos acerca de la conferencia, supimos que debíamos asistir. Nuestras vidas cambiaron en un instante cuando recibimos el diagnóstico de Sofía; incluyendo los impactos financieros.  Sabíamos que debíamos lograr que las cosas funcionen.  Fue importante para nosotros informarnos, aprender de los profesionales, y por sobre todas las cosas, conocer familias que estuvieran en nuestro mismo rumbo.

Afortunadamente, comenzamos a enterarnos acerca de diferentes opciones de financiamiento, incluyendo ayuda que se encontraba disponible a través de la Oficina de Iniciativas para las Familias del Departamento de Salud Pública. Por siempre estaremos agradecidos de haber recibido los fondos que nos ayudaron con los gastos de viaje para asistir a esta Conferencia.

La Conferencia de la Fundación de Investigación de Pitt Hopkins fue fundamental para nuestra familia. Asistimos a encuentros sobre comunicación, sobre las dificultades cotidianas de Pitt Hopkins, sobre cómo planear el futuro, sobre grupos de análisis para papás/mamás, sobre la investigación orientada a una cura, ¡y mucho más!

Estamos muy agradecidos por la generosa ayuda que hemos recibido. Aprendimos mucho, pero por sobre todo, generamos amistades para toda la vida con aquellos que tienen familiares con Pitt Hopkins en el resto del mundo.

Una de las lecciones más importantes que aprendí este año es, cómo buscar. No tengan miedo de buscar ayuda. Hay beneficios disponibles para familias exactamente como la nuestra, ¡así que no dejen de buscar!  
DPH Programs that Support Families

Division of Children and Youth with Special Health Needs
The Division for Children & Youth with Special Health Care Needs serves children birth to 22 and their families. The Division works with families, providers and the community to support children and youth with special health needs.
 
The many programs include: Community Support Line; Care Coordination; Catastrophic Illness in Children Relief Fund: Family Initiatives; Family TIES; MASSTART; Pediatric Palliative Care; Universal Newborn Hearing Screening and more. To get connected, contact our Community Support Line at 800-882-1435. Or learn more by visiting www.mass.gov/dph/specialhealthneeds and find us on Facebook at www.facebook.com/MDPH.CYSHCN.Program.
 
The Community Support Line at DPH serves as the "gateway" to the DCYSHN Program. This toll-free statewide line offers information, technical assistance, and referrals to families whose children have special health care needs and their providers. Experienced Community Resource Specialists are available Monday through Friday from 9:00 am to 5:00 pm and can respond to callers in multiple languages. For help and to learn more about the Department of Public Health's DCYSHN Program contact the Community Support Line at: 800-882-1435 or 617-624-6060 TTY: 617-624-5992 Or find us on line at: www.mass.gov/dph/specialhealthneeds
 
Growth & Nutrition Program
The Growth and Nutrition Program (GNP) under the Nutrition Division in the Bureau of Family Health & Nutrition (BFHN) is a program established over 30 years ago by the Massachusetts Legislature to address the problem of undernutrition among young children in the Commonwealth. For a listing of all locations and contact information, visit www.mass.gov/ dph/growthnutrition. For more information about the GNP contact Julie Schaeffer, State Nutritionist at Julie.schaeffer@state.ma.us or 617-624-6140.
 
Massachusetts Technology Assistance Resource Team
Transitioning children with special health care needs to school can be difficult especially it they are assisted by medical technology. The Massachusetts Technology Assistance Resource Team (MASSTART) Program can help. For more information: mass.gov/eohhs/gov/departments/ dph/programs/family-health/ma-technology-assistanceresource.html
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The EI Parent Leadership Project (EIPLP) strives to develop an informed parent constituency, promote leadership and lifelong advocacy skills for parents and family members, facilitate family participation to ensure that Early Intervention Services are family-centered and support EI programs to identify, train and mentor families to take on roles across the EI and Early Childhood system. The Project is a parent driven endeavor, which continually seeks family involvement and input regarding the needs of families enrolled in Early Intervention and is staffed by parents whose own children have received EI services. The Project staff consists of a Project Director , a Media Coordinator , a Statewide Family Engagement and Collaboration Coordinator, a Statewide Monitoring Coordinator and a Statewide Training and Technical Assistance Coordinator.

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