I know what I was doing in the 90s, but the FDA was having the time of its life too.
https://youtu.be/_uCh1lUR8OQ
ACTION ALERT: Write Congress
Please consider writing your senators! Remember to fill in the form with your details and edit the letter!
Thank you for joining the fight!
https://actionnetwork.org/letters/voices-for-hunter-syndrome-take-action-now?source=direct_link&
We love the Senate Special Committee on Aging
Letter to send your representatives
Subject: Urgent Request: Support FDA Approval of Hunter Syndrome Treatment
Dear [Senator/Representative ___],
I am an [STATE} resident writing to respectfully urge you to contact the U.S. Food and Drug Administration (FDA) regarding the review and approval of treatments for Hunter Syndrome (MPS II).
Families affected by Hunter Syndrome are waiting for therapies that have undergone the appropriate scientific review process. I respectfully ask that you engage with the FDA to ensure the agency follows the law, adheres to established regulatory standards, and acts without unnecessary delay in evaluating and approving these medicines.
For children with rare, progressive diseases, time is not theoretical — it directly impacts survival and quality of life. Congressional oversight plays an essential role in ensuring transparency, accountability, and adherence to statutory obligations.
Please stand with [STATE] families and encourage the FDA to follow the law and approve safe and effective Hunter Syndrome treatments without further delay.
Thank you for your leadership and attention to this urgent matter.
Sincerely,
[Your Name]
[City, Ohio]
[Email]
[Phone]
AI Prompts for FDA Approval Advocacy
Place this prompt into your favorite AI LLM:
Compile a list of senate and representative contacts for [STATE] and draft a letter expressing support for FDA approval of a Hunter Syndrome Treatment. Provide the contacts as links.
Rare Disease Day 2026: Mother Asks Why We Need Approval Anyway
See the LinkedIn post here:
LinkedIn Post
FDA: Urgent Plea for Hunter Syndrome Treatment Approval
Our video expressing our urgent need for FDA Approval in April 2026:
FDA Approval Plea
Giving Tuesday - 2025
Ride on over to our donation button as we work to fund MPS II, Hunter Syndrome research
Nick turns 15 this year and more than ever funding research is a priority. He has endured so many treatments, lumbar punctures, procedures and difficult days that research, innovation and break throughs are the only way to change his future. Thank you for support our research fund!
Design Thinking a Rare Disease to Its Death
Have you seen the Medium post written by Amy Cherrstrom our President & Co-Founder of Raising Rare Boys? Thank you for as always for your support of the mission of Raising Rare Boys.
Read it here: https://medium.com/@acherrstrom/design-thinking-a-rare-disease-to-its-death-96a9e070a7e3
My Hero: Nicholas Bacon
On the blog: The lover of pork fat, the Ambassador of Porklandia, champion of all bacon chefs, the bravest man this side of the pork shoulder...
http://raisingrareboys.blogspot.com/2016/11/nicholas-bacon.html?m=1