CURE - Blog

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

5/21/2016

Meeting Notes

Gay Grossman, Founder ADCY5.org & Parent Advocate

Time for yourself and your marriage. Be creative any way you can to give yourself a break.
Reach out and connect with everyone. Other families who sit next to you in the waiting room could give you new insight.
Never stop Learning. Reading, connecting and asking questions.
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.
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.
Be persistent and patient to find the right doctor and procedures. Always ask questions.
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
Take time to help your child make friends. Educate your child’s friends and promote interaction.
Build a community. Build a team of people who know and who can help.
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.
Teach your child to advocate for themselves and educate those around them so what you advocate can in time be released to them.