We still have about a week left in Ectodermal Dysplasias Awareness Month for 2018. If you haven’t had a chance to participate, it’s not too late!
We have enjoyed seeing your social media posts and hearing what you are doing to spread the word. Jenni and Kris Steele along with their 12-year-old daughter, Allison, will be speaking for the third year in a row to students at Des Moines Area Community College about ectodermal dysplasia. NFED mom, Juliana Morano, will be on a parent panel at Helen Devos Children’s Hospital in Grand Rapids on February 28. She will share her family’s ectodermal dysplasia as part of a Rare Disease Day event. And many others are celebrating in their own ways. We love it!
February 28th will be the grand finale for Ectodermal Dysplasias Awareness Month. We will join families around the world to celebrate Rare Disease Day. It’s a day to raise awareness in our communities about rare diseases and how they impact the lives of our NFED families. A rare disease or disorder is defined in the U.S. when it affects fewer than 200,000 Americans. Ectodermal dysplasias fit this definition. We have some ideas for you on how you can participate in Ectodermal Dysplasias Awareness Month and Rare Disease Day.
Share Your Photo and Story Now on Social Media
You can help show the impact of ectodermal dysplasias by sharing your story and photo. Download our Advocate for Super Smiles sign. Take a photo of yourself or your child holding the sign. Share it on your Facebook, Instagram or Twitter using #supersmiles and #teetharenotcosmetic. Include why you are celebrating Ectodermal Dysplasias Awareness Month.
Download Advocate for Super Smiles SignHost a Facebook Fundraiser for the NFED.
So far, 10 different families are hosting these easy fundraisers in February and have raised more than $5,400 for the NFED!
Dennis Patrick Claire is hosting his second Facebook fundraiser for the NFED in honor of his son, Ronan. He’s calling it, “Ronan’s 2nd Annual #EECSTRONG Adventure Fundraiser.” In his story, Dennis says, “For Ectodermal Dysplasias Awareness Month, we are again having a social media fundraising blitz! We will be chronicling our family adventures to inspire you to donate! We are donating especially for those families with loved ones afflicted whose SERVICES ARE NOT COVERED BY INSURANCE.”
If you start at our NFED Facebook page and click on “Raise Money,” it will walk you through the three easy steps to set up your fundraiser and share it with your friends. It literally only takes a few minutes!
Hang This Flyer In Your Community
We all know that education is key. Our Advocacy flyer is full of facts about ectodermal dysplasia, its impact on teeth and the challenges our families face. Where could you hang this flyer in your community? Perhaps you can post it at your workplace or church or maybe your child’s school. You will never know who may see it and realize they have a loved one who is affected. Download your Advocacy flyer today and start hanging them around town! Be sure to get approval first.
Attend a Rare Disease Day Advocacy Event
There will be at least 292 Rare Disease Day events going on in 64 countries! In the United States, the Rare Action Network is organizing Rare Disease Advocacy events at state capitols. Individuals representing all rare disorders are invited to participate. Does this interest you? If so, find an event in your state or country.
These are just a few ways to celebrate Ectodermal Dysplasias Awareness Month. Pick ones that are right for you.
- Share our Advocate for Super Smiles video.
- Share our daily facts posted on our Facebook and Twitter.
- Email us a picture of your Super Smiler so we can post it on our Facebook.
- Wear your NFED gear! If you don’t have any, check out our store.
- Blog about why you are advocating for ectodermal dysplasias like Becky Abbott did in her story.
What have you and your family done for Ectodermal Dysplasias Awareness Month? Share with us in the comments below.
If you have any questions or need more information, contact Jodi at 618-566-6875.
#supersmiles
#teetharenotcosmetic
Read 14 Things You Didn’t Know About Ectodermal Dysplasia and the Top 10* Most Common Ectodermal Dysplasias.
Thank you for sharing our sweet granddaughters super hero photo! Holly Hamann from Louisiana ! We love her so much. If I could trade places with her and take the ED away, I would ! She is our little hero and smiles all the time. Our prayers go with her and the thousands effected with this. Thank you , all of you, for taking a stand and supporting everyone.