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Coordinator of Education, Referral, and Advocacy

Cate Walsh Vockley, MS, CGC, is NNPDF's Coordinator of Education, Referral, and Advocacy.  Cate is a board certified genetic counselor at Children’s Hospital of Pittsburgh.  She has been involved with the Niemann-Pick Disease community for a number of years, beginning with her role in the Mayo Clinic project on DNA analysis of the NPC1 and NPC2 genes. 

Cate obtained her Master of Science degree in genetic counseling from the University of Colorado Health Sciences Center in 1986. This education provided a unique combination of knowledge about the scientific and medical aspects of hereditary disease while also emphasizing the psychological effects of such diagnoses.  Her major areas of interest include inherited metabolic disorders, hereditary cancer conditions, and ethical and psychosocial aspects of human genetics.

Cate has worked in Denver, at Yale University, at the Mayo Clinic, and now at Children’s in Pittsburgh. She has always seen herself as an advocate for patients and families, whether working to educate about new diagnoses, obtain appropriate health care, respite care, or insurance coverage, or in working for support for continuing research.

Cate has worked in a multidisciplinary metabolic disease clinic, providing ongoing education, counseling and support for families as they have dealt with the challenges of a chronic medical condition in a loved one. Through this work, she has developed a relationship with a national network of health care providers with expertise in metabolic disease diagnosis and management. This serves as an excellent resource as we strive to quickly identify experienced providers and obtain prompt diagnoses for individuals.

Cate has also been involved in developing programs at the institutional, state, and national levels for providing and improving services to families, including recent work on the Minnesota planning grant for follow up of newborn screening across the state. The skills developed through these efforts will assist her as she develops new programs and resources for individuals affected by Niemann-Pick disease and for their families and supporters.

Contact information:

Cate Walsh Vockley, MS, CGC
Coordinator of Education, Referral and Advocacy
National Niemann-Pick Disease Foundation
Senior Genetic Counselor
Children's Hospital of Pittsburgh
One Children's Hospital Drive
4401 Penn Avenue
Pittsburgh, PA 15224

Phone: 412-692-7349
Fax: 412-692-7073

E-mail: catherine.walshvockley@chp.edu

Resources available from Cate's Office

  1. NPA/B (ASM deficiency) health care provider information folders
  2. NPC health care provider information folders
  3. NPA/B (ASM deficiency) patient and family information folders
  4. NPC patient and family information folders
  5. Personal medical history log
  6. Education of the child who has a neurodegenerative disease
    1. NPD
    2. Batten disease – similar issues; applicable to NPD children
    3. Leukodystrophy
    4. Other
  7. Pediatric dementia
  8. Gastrostomy information
  9. Respiratory information
  10. Teens and chronic illness/Transition to adult status (health care, legal issues, financial, etc.)
  11. Sibling Issues and Support
  12. Bone marrow transplantation/stem cell transplantation
    1. Process
    2. Issues
  13. Approaches to care of the caregiver
    1. Self-assessment
    2. Caregiver’s Bill of Rights
    3. Twenty Ways (and then some) to Care for Caregivers
  14. Medication suggestions (listserv and other) – REMEMBER TO ALWAYS REVIEW WITH YOUR PHYSICIAN before starting any new medication
    1. Saliva management
    2. Sleep
    3. Other
  15. Hospice and respite resources
    1. Local
    2. National
  16. Grief support
  17. Middle and High School Curriculum Supplement
  18. Information and Resources about Late-onset NPC
  19. Managing Tantrums
  20. Incontinence management information (planned)
  21. Nutrition information (planned)
  22. Alternative medications and therapies, supplements and off-label use (planned)