CURE Support Group
  • Home
  • Meetings
  • About
  • Resources
    • Organizations
    • Fact Sheets
    • Resource Lists
  • Contact
  • Facebook

Meetings

Importance of Advocacy in Medical Diagnosis and Treatment - Gay Grossman (Meeting May 21, 2016)

5/21/2016

0 Comments

 
Meeting Notes

​Gay Grossman, Founder  ADCY5.org & Parent Advocate

  1. Time for yourself and your marriage. Be creative  any way you can to give yourself a break.
  2. Reach out and connect with everyone. Other families who sit next to you in the waiting room could give you new insight.
  3. Never stop Learning. Reading, connecting and asking questions.
  4. Don’t doubt yourself. As a parent you know your child. Don’t let anyone, medical professional or otherwise make you doubt what you see is not right just because your child does not fit in a particular disease category.
  5. Ensure your child has all the equipment and tools to enable them equal opportunity and access to education as other students. Work with school to get the software, materials and technology your child needs.
  6. Be persistent and patient to find the right doctor and procedures. Always ask questions.
  7. When things get very rough know that you are not alone. There are other families out there too.   When things seem impossible, break it down and tackle
  8. Take time to help your child make friends. Educate your child’s friends and promote interaction.
  9. Build a community. Build a team of people who know and who can help.
  10. Share. The more you share with others the more you  help yourself and others. When media ask to write your story, always ask them to include your child’s    gene mutation in the article. This will help you find others like your child.
  11. Teach your child to advocate for themselves and educate those around them so what you advocate can in time be released to them.

Resources

“We Gained Hope.” The Story of Lilly Grossman’s Genome, National Geographic 3/11/2013
http://phenomena.nationalgeographic.com/2013/03/11/we-gained-hope-the-story-of-lilly-grossmans-genome
 
La Jolla teen honored at White House Film Fest, La Jolla Light, 3/14/2014
http://www.lajollalight.com/news/2014/mar/13/la-jolla-teen-honored-at-white-house-film-fest/
 
Letter to the Editor: Trail-blazer Lilly Grossman starts petition to make schools more accessible to disabled students, The Quaker Campus, 2/4/2016
https://thequakercampus.com/2016/02/04/letter-to-the-editortrail-blazer-lilly-grossman-starts-petition-to-make-schools-more-accessible-for-disabled-students/

0 Comments



Leave a Reply.

    Picture

    Categories

    All
    Care For The Caregiver
    Emergency Preparedness
    Events
    Finance/Legal/Advocacy
    Funding Equipment
    Genetic Testing
    Meeting Notes
    Mother's Day
    Rare Diseases
    Research/Registries
    School/Education
    Therapies
    Uplifting

    Archives

    July 2025
    May 2025
    March 2025
    January 2025
    November 2024
    September 2024
    July 2024
    May 2024
    March 2024
    January 2024
    December 2023
    November 2023
    October 2023
    September 2023
    July 2023
    June 2023
    May 2023
    April 2023
    February 2023
    January 2023
    December 2022
    September 2022
    July 2022
    May 2022
    April 2022
    March 2022
    February 2022
    January 2022
    November 2021
    September 2021
    August 2021
    July 2021
    May 2021
    February 2021
    January 2021
    November 2020
    August 2020
    July 2020
    June 2020
    April 2020
    February 2020
    September 2019
    July 2019
    May 2019
    March 2019
    November 2018
    October 2018
    June 2018
    May 2018
    February 2018
    January 2018
    November 2017
    October 2017
    August 2017
    June 2017
    May 2017
    February 2017
    November 2016
    October 2016
    August 2016
    July 2016
    May 2016
    January 2016
    October 2015
    July 2015
    April 2015
    January 2015
    November 2014
    August 2014
    June 2014

    RSS Feed

Proudly powered by Weebly
  • Home
  • Meetings
  • About
  • Resources
    • Organizations
    • Fact Sheets
    • Resource Lists
  • Contact
  • Facebook