Fighting H.A.R.D Foundation

Email: info@fightinghardfoundation.org

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Our Mission

Our mission at Fighting H.A.R.D. Foundation is to help children with rare diseases and chronic illnesses to know that they are not alone!

What We Do

To accomplish our mission of helping these children to know they are not alone, we raise awareness for many of the known rare diseases in the United States, offer support and care packages to children and their families, fund projects and events, and raise funds to assist in financially supporting Pediatric Palliative Care Programs that can help to provide children with the care that they need and deserve during the course of their battle.

Why We Do It

For many families in the rare or chronic illness world, there are very few resources. Children are often bounced around from one specialist to another leading to multiple diagnoses an often misdiagnoses. Some are undiagnosed, causing even more stress on families when they know that something is wrong with their child. We need to build a support system for these kids and their families to help them know that they are not alone! Awareness will lead to funding, funding will lead to research, and research will lead to hope for a cure!

Did You Know?

There are over 7,000 known rare diseases in the United States
30 million people in the US have been diagnosed with a rare disease and over half of them are children
80% of rare diseases are genetic in origin
30% of children with a rare disease will not live to see their 5th birthday
It takes an average of 8 years and 10 specialists to receive an accurate diagnosis of a rare disease
There is often a lack of quality information and scientific knowledge of rare diseases

Featured Illness

Batten Disease

June's Rare Disease is Batten Disease! Batten Disease is a rare genetic disease that is one of about 50 LSDs (lysomal storage diseases).It means that your genetics can be interrupted and then cells can no longer dispose of wastes. Protein and lipids (fats) build up and leave cells unbalanced. With this comes progressive neurological damage. Some of these symptoms include seizures, impaired vision, personality/behavior changes, dementia, and the loss of motor skills such as walking, talking, and communicating.