Massachusetts Down Syndrome Congress Prenatal Parents First Call Program
I have the privilege of collaborating with MDSC by being a part of their Prenatal Parents First Call Program. I provide an intensive training session to first call parents. Included in this training is information on prenatal screening, diagnosis, the grief process, how parents process the diagnosis and resources for parents as well as First Call mentors. I also provide ongoing supportive counseling to expectant and new parents, as well as those whose children have complex medical needs. I have been running support groups for parents of individuals with Down syndrome across the lifespan for numerous years.
Ben's Dream: Sanfilippo Syndrome Support Group
Initially in 2010, with a grant from Shire Pharmaceuticals, Ben's Dream established a support group for mother's of children with Sanfilippo Syndrome. I had the privilege of facilitating this support group to help the mothers focus on their emotional needs. In a protective environment, the mothers were able to share their fears, frustrations and triumphs. They seemed to feel liberated and have a decreased feeling of isolation, something many parents of children with chronic health conditions report experiencing. Peer support is a wonderful thing; to be able to laugh, cry and identify with others who are walking in your shoes seems to be the best medicine available at times. Even though we lost Ben in 2014, his dream continues.
Courageous Parents Network
CPN is an online destination created by families, for families, to support and strengthen them as they care for children with life limiting conditions. I am a member of the professional advisory board and as a provider I am available to families in Massachusetts for supportive genetic counseling. Please view some of our videos here on CPN.
Latest video: Should We Grow Our Family?
I have the privilege of collaborating with MDSC by being a part of their Prenatal Parents First Call Program. I provide an intensive training session to first call parents. Included in this training is information on prenatal screening, diagnosis, the grief process, how parents process the diagnosis and resources for parents as well as First Call mentors. I also provide ongoing supportive counseling to expectant and new parents, as well as those whose children have complex medical needs. I have been running support groups for parents of individuals with Down syndrome across the lifespan for numerous years.
Ben's Dream: Sanfilippo Syndrome Support Group
Initially in 2010, with a grant from Shire Pharmaceuticals, Ben's Dream established a support group for mother's of children with Sanfilippo Syndrome. I had the privilege of facilitating this support group to help the mothers focus on their emotional needs. In a protective environment, the mothers were able to share their fears, frustrations and triumphs. They seemed to feel liberated and have a decreased feeling of isolation, something many parents of children with chronic health conditions report experiencing. Peer support is a wonderful thing; to be able to laugh, cry and identify with others who are walking in your shoes seems to be the best medicine available at times. Even though we lost Ben in 2014, his dream continues.
Courageous Parents Network
CPN is an online destination created by families, for families, to support and strengthen them as they care for children with life limiting conditions. I am a member of the professional advisory board and as a provider I am available to families in Massachusetts for supportive genetic counseling. Please view some of our videos here on CPN.
Latest video: Should We Grow Our Family?
