Cate Walsh Vockley, M.S., C.G.C on Genetic Counseling & NP-C

April 16 , 2010 -

Cate Walsh Vockley, M.S., C.G.C. is a Genetic Counselor and serves as the Coordinator of Education, Referral and Advocacy for the National Niemann-Pick Disease Foundation (NNPDF). Ms. Walsh Vockley's special class lecture for the CRND students, “Rare Diseases: A Family-Focused Perspective” reviewed the founding and evolution of NNPDF, a “family-driven” non-profit organization. NNPDF promotes research for Niemann-Pick Diseases treatments and serves families affected by the NP disease and its several types. NNPDF has raised over $4.5 million for research and services. Research funded by NNPDF led to the discovery of NPC1 gene and understanding of the actions of NPC1 and NPC2 proteins.

As Ms. Walsh Vockley shared her extensive humanistic, clinical, and organizational experience with students, she explained the organic evolution of the NNPDF community and its response to families in need:

"Having an opportunity for families to work together through something like the National Niemann-Pick Disease Foundation has been so helpful to families, but if you look at the kind of issues that parents define when we work with families - the diagnosis affects the whole family. One of dad said, 'At the very beginning it is not just the child who is affected, but the parents, the siblings, the grandparents, and extended family.' And, we target programs to work with all these individuals. A mom said, 'This diagnosis puts us in a whole new world. We have lost by having this diagnosis made. We have lost everything that we expected to be normal about our life. We expected our child to go to kindergarten, to make friends, to progress through middle school, to learn to drive, to have a girlfriend or boyfriend, to graduate and go off to college.' That dream is out the window. And, every time that one of those milestones might be passed, they relive that loss. So, we work with families around what is called chronic grief. Or, chronic bereavement as they deal with loss over the lifespan. Loss of dreams.

NNPDF services include: emotional support to individuals and families; referrals to care providers and specialists; assistance with medical coverage, respite and palliative care; practical suggestions for day-to-day care; genetic counseling; newsletters and e-media with Foundation information, research updates, listservs; family support and medical conferences; educational initiatives – middle and high school, advocacy for IPE, professional; programs for teens and siblings; awareness campaigns; balanced discussion of therapeutic options and more.

(Photo above, W Wall, 2010)




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