It all adds up.
Each time someone reads a blog post to learn more, each time someone shares or connects with another, each small conversation with a child about the greatness found in different appearances or abilities… that builds upon itself to lead to more acceptance, more joy, more love, more respect, more self-confidence. For ourselves and each other.
And these things happen because of awareness and education.
This week, in honor of Ichthyosis Awareness Month this month, we’re hosting a fundraiser to continue this education and awareness – and our family is adding to the math this year. We’ll be matching your donations dollar for dollar up to $500, with every penny raised going to the Foundation for Ichthyosis and Related Skin Types!
FIRST is a patient advocacy organization that strives to ensure that those affected with ichthyosis receive the best possible support and information regarding medical treatments that are currently available.
Education is one of the main focuses of FIRST on a daily basis. They utilize resources and take actions in order to educate and advocate – from awareness events to the educational pamphlets that our family took to Brenna’s school when we began to prepare for her to start preschool. FIRST also focuses on support events, like the biennial family conference that we first attended in 2014 and that we’ll be attending next month in San Diego!
And lastly, what FIRST does with donations is research! The kind of research that has made it possible for babies born with Brenna’s condition to even survive the neonatal period. Even just 10 years ago, survival was rare. But with new treatment options and more education, more babies with ichthyosis are surviving and thriving!
Even a small donation to FIRST will be a huge gift to families like ours, by helping us educate about ichthyosis.
Will you add on too? Will you help us build a better world for children like Brenna? Go here to give quickly and securely – and double your donation with our personal match!
As we finish out this last full week of Ichthyosis Awareness Month, I want to thank you for caring. There are so many things that fight for space in our minds and our hearts – so the fact that you care about our family, our little girl and others who are affected by ichthyosis is just incredible. I hope that you can consider joining in our fundraiser with any kind of gift, large or small, so that we can continue spreading awareness, helping to educate and providing research – all adding up to a better life for kids like Brenna and families like ours. THANK YOU!
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