I feel this is a very important piece of legislation that could benefit many people living with rare diseases. Click the link and then click the “Take Action” button. Follow the steps and instructions to send messages of support to your legislators.
In honor of Andrew Abdayem, who passed in March due to respiratory crisis at age 23, please light a sparkler or “something spectacular” this 4th of July and share a picture or video of it. His mother, Tracie, told me the 4th of July was his favorite holiday.
If you share a video or picture of your sparkler or fireworks in his honor, please tag @ihaveheardofMG on Twitter or post a link to your video or picture in the form below. Make sure your photo or video are set to public so I can see it. Within a few days I’ll put together a slideshow.
While videos are likely too large to email, photos can be emailed to me at