THE FUTURE OF EPP...OUR CHILDREN!
Thank you for all the photos and letters submitted to the APF for our photo campaign to the FDA. Your images and your comments are so POWERFUL! They truly show the impact that having EPP has on your world and the pain that it inflicts. If you have not yet submitted a photo, there is still time and it only takes a moment. PLEASE follow the directions below and the APF will do the rest. We need approval of Afamelanotide 16mg (Scenesse) so our children will have the opportunity for a future out of the darkness.
1. SEND A PHOTO by mail or email/scan of your child or you as a child. Choose a photo that shows the impact of this disease - either in full protective "gear", having a reaction, or avoiding a reaction. ** Please indicate if you would prefer your photo not be identifiable**
2. Write simple comments or a letter expressing your concerns and how a treatment would impact your life. (Ideas: Need approval now! Suffering every day! Want to go to school just like everyone else! It hurts like_____ (fill in blank)! Approve Afamelanotide now!)
3. Include your name, address, and contact information
4. Send photos and comments by mail or email to the APF office.
MAIL:
American Porphyria Foundation
4900 Woodway Drive, Suite 780
Houston, Texas 77056
EMAIL: edrinw@porphyriafoundation.org
5. We will do the rest!
REMEMBER TO SUPPORT THE APF THROUGH AMAZONSMILE!
Your Amazon purchases can support the APF through the AmazonSmile program. Amazon will donate 0.5-0.8% of the price of your eligible purchases to the APF, at no cost to you. Please make the APF your choice of a charitable organization. Support porphyria research while shopping!
Donations to the APF will ONLY be available from shoppers who visit Amazon via a special web address, www.smile.amazon.com, instead of the normal www.amazon.com homepage. Be sure to bookmark this new address. AmazonSmile is the same Amazon you know - same products, same prices, same service. It is easy and free!
Please follow the link: http://smile.amazon.com/ch/36-4401266
"Remember....Research is the key to your cure!"
