Phelan-McDermid Syndrome Changes Everything
Raising awareness about Phelan-McDermid syndrome (PMS) is a great way you can inform the community about this rare genetic disorder. This can lead to increased chance of diagnoses, boost research interest, and grow support for families.
There are many ways to increase awareness in your community, your child’s school, your local legislature and with family and friends. By sharing information about Phelan-McDermid syndrome and how it affects your loved one, you can make life easier for your child. You will find that people around you genuinely want to know how they can support you and your child. Sharing your story helps the community see that your child is not just a PMS diagnosis but a wonderful, celebrated, extraordinary member of our community.”
Social Media
Create your Facebook Frame
- Edit the Canva frame with your photo
- MAKE YOUR POST SHAREABLE! Remember, posts on closed groups are NOT shareable.
INCLUDE this statement in your post: “for more information about Phelan-McDermid syndrome, go to www.pmsf.org“.
Tell your story – on all posts, please:
Tag us @Phelan-McDermid Syndrome Foundation on Facebook and @pmsf_official on Instagram.
Use #pmsad, #PMSChangesEverything, #phelanmcdermidsyndrome
Add your PMS loved one’s photo for why you #ShineGreen
- Edit the template with your child’s photo
Post your story on social media. Tell WHY you are raising awareness
Ask your friends to share your post
Add your personal story of how PMS has changed your life
- Tell how your life is changed by PMS in your social media posts.
PMSF may share these posts on our website or other media throughout the year.
Add your PMS loved one’s photo alongside PMS Facts
- Sharing facts about Phelan-McDermid syndrome will increase awareness.
- Upload your loved one’s photo
PMSF may share these posts on our website or other media throughout the year.
Shine Green.
Watch videos from past years
Shine Green. Post. Share. Contact Media
Share with your local legislators and media outlets
The best way we can spread awareness is to draw media attention. Focus on your local newspaper, TV and radio stations. Look up their reporting staff and contact the ones that might be a good fit.
Use our press release or lighting request letter if you need some help getting started. Reach out to the news media by early October so they have a story ready for Awareness Day.
You want to make #shinegreen for PMSAD is the focus when pitching them, but if they do a story, they’ll most likely want to hear about your PMS journey, so don’t be afraid to share. Point back to PMSF.org so readers can learn more about Phelan-McDermid syndrome.
Tell them WHY awareness matters, what it means to you and your family, and how #PMSChangesEverything.