How to Help
There are lots of ways you can help Sophia's Hope!
Painted Rocks to Raise Awareness
Sophia was a bright light in this world, and gave so much joy to all who knew her. We decided to spread some joy in her memory. We have started painting rocks with bright and joyful designs, and placing them in our communities and places we travel. We are hoping to spread love and awareness for EB Research- for Sophia's Hope.
If you found a rock, we hope it brightened your day. We are glad it brought you here to learn about Sophia's Hope. Please find a new spot for the rock, or better yet paint another! Click Here for instructions!
We would also love to know how far Sophia's Hope is reaching. If you have found a rock, please let us know on Facebook or Instagram!
Support EB Research
The EB Research Partnership (EBRP) is committed to finding viable treatments and a cure for all forms of Epidermolysis Bullosa. The research being funded by the EBRP is our best chance at finding a cure. It is absolutely essential that these research endeavors are being supported.
Please consider donating today. A cure did not come in time to save Sophia, but many other children are praying for a cure each and every day. The research funded by EBRP will be instrumental in saving those children's lives.
Support EB Families
Dystrophic Epidermolysis Bullosa Research Association (DEBRA) is committed to providing people with EB the resources, care, and supplies they need to survive. Wound care for EB is so unique that most doctors are unable to help - DEBRA provides information for new EB parents, guides and tutorials, as well as assistance with obtaining necessary supplies. Many health insurance companies do not cover wound care, which can cost upwards of $30,000 a MONTH. DEBRA helps distribute wound care supplies to those in need.
We are very interested in creating an EB Research Fundraiser Event in memory of Sophia. We have not begun this journey yet, but would love to eventually have a family-focused event (maybe a walk, with a picnic to follow) that could raise funds and spread awareness about EB.
If anyone in the Fairfield County, CT area (we are in Newtown, CT) would like to participate in planning an event, or would like to donate services or supplies to a future event, we would love to hear from you!
Send Us Love
It means so much to hear that Sophia's story has reached someone new, and touched their heart. Sophia's joyful and courageous spirit has been such an inspiration to those who knew her. We hope reading about Sophia's life, seeing pictures of her courageous smile, and learning more about the fight to cure EB can be an inspiration to you, too. Knowing that people are thinking of Sophia, and are inspired by her short but meaningful life story, is a great comfort to us. We would love to hear how Sophia's story has impacted you.
Epidermolysis Bullosa is so rare that a majority of doctors, nurses and hospital staff have never even heard of it. It is so important that people learn about EB, so that we can spread awareness and increase funding for finding a cure.