Hosted by the Nelsen Family
Shady Oak Beach, Hopkins, MN
Both Karl and our six-year-old daughter Samantha, are affected by a rare genetic skin condition called Ectodermal Dysplasia. This condition affects sweat production making it difficult for Sammi to cool her body. In addition, she has dry, itchy skin, sparse hair, thick nails and will be missing some adult teeth. However, she is one of the lucky ones. Other variants of this rare condition have missing limbs or are blind. Sammi is becoming more and more aware of her unique features, bothered most by her lack of hair, a defining feature for girls. She has learned already how to educate people about her condition and not get upset when strangers think she is a boy. As parents, we notice when others do a double take when they see her wearing her wig, or when they are trying to figure out if she is a boy or a girl. We worry about her getting overheated, or about her being sensitive to the remarks of others, about her self-image/self-esteem. However, Sammi typically is happy just to be herself, dancing and smiling.
Our goal with this run/walk is to raise awareness about Ectodermal Dysplasia, raise funds to support other families affected by Ectodermal Dysplasia, help support research efforts working toward cures, and surround Sammi and kids like her with a strong community that supports them through their journey in life. Please take time out of your busy schedules to join us for this event on September 24th, or consider a donation to the National Foundation of Ectodermal Dysplasias (NFED) Here is what your donations can do for families…..every little bit helps!
Here is what your donations can do for families…..every little bit helps!
- $2,500+ Provides dentures for a child with few or no teeth.
- $1,000+ Buys medical supplies and nutritional support for a child with skin erosions.
- $500+ Buys an air conditioning unit to cool a child’s bedroom or play area.
- $250+ Pays for medical and dental evaluations for an individual with Ectodermal Dysplasias.
- $100+ Provides a cooling vest for a child participating in sports or other activities.
- $50+ Helps supply educational materials for new families to learn about Ectodermal Dysplasias
For more information email The Nelsen’s.