SD Undiagnosed Family Support Group
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Welcome to

SAN DIEGO UNDIAGNOSED
​FAMILY SUPPORT GROUP

August 2018 Support Group Meeting

6/7/2018

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When: Saturday August 4, 2018, 2-5PM
Where: Ronald McDonald House 2929 Children's Way San Diego, CA 92123 

​Lisa Thompson RN, Certified Healing Touch Practitioner, Licensed Massage Therapist, and Nurse at RCHSD for over 30 years 

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What is Office of Clients’ Rights Advocacy and Medi-Cal Overview (Meeting May 5, 2018)

6/7/2018

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Raymond Kwong, Multicultural Affairs Advocate and Rebecca Yang, Legal Advocate Disability Rights California 
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May 2018 Support Group Meeting

5/1/2018

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When: Saturday May 5, 2018, 2-5PM
Where: Ronald McDonald House 2929 Children's Way San Diego, CA 92123 

Antonia Sereseres and Rebecca Yang, Disability Rights California
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Genetic Testing Advancements and Opportunities within Rare, Undiagnosed, and Genetic Disease (Meeting Feb. 3 2018)

2/22/2018

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Molly McGinniss MS, LCGC Genetic Counselor and Senior Market Development Manager, Illumina 
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February 2018 Support Group Meeting

1/29/2018

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When: Saturday 3 February 2018, 2-5PM
Where: Ronald McDonald House 2929 Children's Way San Diego, CA 92123 

Molly McGinniss, MS, LCGC Genetic Counselor and Senior Market Development Manager, Illumina 
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Mark your calendars for 2018 meetings!

1/15/2018

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All meetings are on Saturdays 2-5pm at The San Diego Ronald McDonald House

February 3rd
May 5th
August 4th
November 3rd
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December 2017 Open House & Community Engagement

11/20/2017

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When: Saturday 2 December 2017, 10AM-12PM
Where: Ronald McDonald House 2929 Children's Way, San Diego, CA 92123 

​Special Presentation
Emergency Preparedness by the American Red Cross
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Kimberly Bower M.D. FAAHPM, HMDC, Chief of Palliative Medicine, Rady Children's Hospital San Diego (Meeting Nov. 4, 2017)

11/4/2017

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Meeting Notes
  1. Extra layer of supportive care – Palliative care empowers parents and adds care to support the patient and their family. Lightening the load by helping to navigate a complex medical system.
  2. Looks at the whole patient – Personalized holistic care that looks at the physical, social and spiritual care of the patient taking into consideration goals, values and faith of the family unit. 
  3. Communicating with all the different specialists involved, weighing the burdens benefits of treatments so to build a plan that is centered around the whole patient and the family’s goal for their child.
  4. Optimizing quality of life for patient and family and providing comfort for pain and distress. 
  5. Identify community based resources – Provide local resources to further help. 
    1. Courageous Parents - https://courageousparentsnetwork.org/ 
    2. Coalition for Compassionate Care of California/Children’s Hospice Palliative Care Coalition - http://coalitionccc.org/
  6. A familiar face and continuity – A care team who knows the patient and their family and communicates their wish across the different settings of clinic, hospital, skilled nursing facility and home. 
  7. Advocate for palliative care – When there is decline in health, frequent ER visits, longer hospitalizations, difficulty managing symptoms, desire to avoid hospitalizations and provide more care in the home, contact the palliative care team at your local children’s hospital.
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November 2017 Support Group Meeting

10/14/2017

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When: Saturday 4 November 2017, 2-5PM
Where: Ronald McDonald House 2929 Children's Way San Diego, CA 92123 

Kimberly Bower M.D. FAAHPM, HMDC, Chief of Palliative Medicine, Rady Children's Hospital San Diego ​
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Matthew Bainbridge, MSc PhD, Principal Investigator, Rady Children’s Institute for Genomic Medicine (Meeting August 12, 2017)

8/12/2017

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Meeting Notes
  1. No diagnosis. What now? -  When tests come back negative, explore more testing, enroll in research, re-analyze data periodically as new knowledge is found and sometimes re-test is worth doing every 3-5 years.
  2. Research genetic testing – Apply to programs like the Undiagnosed Disease Network (UDN) or Centers for Mendelian Genomics (CMGs at Baylor-Hopkins, Broad Institute, University of Washington and Yale University). Use Google Scholar to find and connect with a researcher working in your disease area. 
  3. Pros and cons of research vs clinical – Research is low cost or free, more novel findings and may have thorough work up (UND). But very slow process that can take years. Keep in mind that research labs are not regulated like clinical labs are.
  4. Have a diagnosis? Now what? – Always ask if there now needs to be a change in care management? What clinical trials are available for the disease? Seek and reach out to a researcher in this field. Find a support group and connect with other patients/parents.
  5. Desperate but cautious – While exhausting everything possible to help your child, be careful. Do not waste money on treatments that are not available in the USA, not supported by science or your doctor thinks are not credible. Be wary of health fraud scams.
  6. The right test – There are many genetic tests available now. Have you had a genetics consult to go through results? Do you need more testing and will testing be approved or covered?
  7. Communications – Don’t give up on reaching out to doctors for testing or referrals to other programs. Talk to your genetic counselor. Don’t be shy to contact scientists working on your disease area. “Scientists are like bears they are more scared of you than you are of them.”
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    The San Diego Undiagnosed Family Support Group brings together families of undiagnosed children to learn, share, and support each other amidst their long journey in search of a diagnosis.

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