At The Butterfly Family Fund, we are dedicated to supporting caregivers and families living with Epidermolysis Bullosa, while empowering and inspiring a life of wellness. We provide resources, education, and community to help navigate life with EB through positivity, resilience, hope, connection and compassion.
Our mission is to create a nurturing space where caregivers avoid burnout and families thrive. We hope to help navigate the delicate world of EB where both caregivers and their families can not only find balance and wellness, but also experience as much joy this world can offer.
Epidermolysis Bullosa is often referred to as "the worst disease you never heard of."
With EB, any kind of bumping or friction, causes the skin to blister or shear off.
This not only impacts the skin, but organs including the esophagus, mouth, eyes, trachea, and stomach. Something as simple as eating causes excruciating pain, often leading
to the inability of enjoying the simple life pleasure of eating a meal.
This is one, of many life pleasures that are ripped away from someone living with EB.
Parents often learn about EB the day their child is born.
Then and there, EB becomes their life.
Children living with EB are often referred to as butterfly children because their skin is as fragile as butterfly wings.
Although those living with EB may appear fragile, they are by far the strongest, most resilient, courageous, beautiful souls you will ever meet. We are honored to know them and honored to be part of their journey.
The Butterfly Family Fund is a
501(c)(3) non-profit organization (Tax ID 27-2762807) dedicated to changing the lives of those living with EB.
We believe in doing little things, with big love and appreciate any way in which you can help.
We know that it will be because of a kind, compassionate and supportive community that we get these families what they truly deserve and we thank you for being here.
We know that it will be because of a kind, compassionate and supportive community that we get these families what they truly deserve and we thank you for being here.
|
We are hoping to send as many of our BFF Families as possible to the Debra Care Conference, and we can't do it without you!
We're hoping if everyone can give just one dollar, with enough kind people we will be able to help in a BIG way. The DCC is an opportunity for families to spend time together and be around people that just get it. This is incredibly important for families to experience, because they live in a world where just about no one gets it. Families have the opportunity to learn from top healthcare providers who specialize in EB.
This event only happens once every two years, which makes it even more important that we get as many families there as possible. The cost is around $1400 for a family of four, so it is by no means easy on the budget. That's where we hope to have your help.
Can you help us get our families to the DCC?
Click the Donate button below if you'd like to be part of something great!
We're hoping if everyone can give just one dollar, with enough kind people we will be able to help in a BIG way. The DCC is an opportunity for families to spend time together and be around people that just get it. This is incredibly important for families to experience, because they live in a world where just about no one gets it. Families have the opportunity to learn from top healthcare providers who specialize in EB.
This event only happens once every two years, which makes it even more important that we get as many families there as possible. The cost is around $1400 for a family of four, so it is by no means easy on the budget. That's where we hope to have your help.
Can you help us get our families to the DCC?
Click the Donate button below if you'd like to be part of something great!
Guess what's coming soon?
our newest program...
Compassion Conservatories!
Wellness retreats designed to empower caregivers to live a life of wellness, while avoiding burnout!
All Things Sweet BakebookThe bakebooks are here!
With 200 sweet recipes, this bakebook is sure to create endless smiles and happiness! Get your very own BFF Tumbler!Howe Creative is making the best tumblers and how sweet is it to be able to represent and support the BFF!
Dayna is donating 20% of all proceeds directly to our families and we are so thankful for her kind, generous heart! |
Makes wishes come true!The BFF is able to make a positive impact because of the generosity of others.
If you have the means, we would be forever grateful for a visit to our Amazon wishlist. |