Check back for some pictures from the fundraiser!!!! SOON!!!
I hope you're all doing well. I wanted to invite you to a fundraising Hawaiian Luau/Barbeque/Picnic!! being hosted by my family for a charity called DEBRA. This organization provides funding for research and support for people, mainly children, afflicted with the disease called Dystrophic Epidermolysis Bullosa.
As you may or may not know, I have a cute, mischevious little 5 year old niece named Erum Khan who suffers from Dystrophic Epidermolysis Bullosa ( for further information about the disease please read below). Erum loves to sing, draw and perform magic shows, she also loves being a doctor (her grandparents can testify to her excellent bedside manner and diagnosis!) and a teacher (now I can finally count and say my abc's!). Despite suffering day to day excrutiating pain from her condition, the tears that trickle down her face from her pain quickly disappear if she sees someone else with a problem, she comforts them with a "there, there, everything will be better soon, you have to be brave" or we hear her famous "knock-knock" jokes! My niece is such an inspiration and a blessing to our family. We love her very much.
Please come and join us on Saturday July 21st for "Erum's Hawaiian Summer Party" to be held at Bartlett Park District. There will lots of good food and fun games for children and adults. Tickets will be a minimum $20 donation for adults and children under the age of 10 will be free. We're planning to have a lot of fun and hope that you'll be able to make it.
Hope to hear from you all soon!
**DebRA describes the devastating effects of this disease: "So much of the joy of childhood lies in the sense of touch. A mother's caress after a warm bath. A father's hug at bedtime. The kiss of a grandparent. The feeling of grass beneath bare feet, the welcoming fur of the family pet, the worn leather of a baseball glove.
Imagine now for a moment not being able to hold your child because of the pain and suffering your touch will cause. Imagine a child who will never know what it's like to run, skip or jump, or to play games with other children because even the slightest physical contact will injure his or her skin.
Imagine further an infant who cannot be cradled in its mother's arms or a child who screams out each time it is bathed because the water touching its open wounds creates incredible pain.
There are thousands of American children for whom this is a reality. They are born with a disease that robs them of childhood - of carefree days in the sun, romps with playmates, the snuggle with mom and dad that we tend to take for granted. For these little ones, there is an endless struggle against permanent scarring, permanent scars, massive disability, loss of mobility, and sometimes death.
The disease has a complicated name - Dystrophic Epidermolysis Bullosa - but its effects are brutally simple: a life of unending pain.
The Dystrophic Epidermolysis Bullosa Research Association of America, better known as DebRA, is dedicated to finding a cure and ending this terrible disease. With the help of dedicated health professionals and scientists great strides have been made. But the battle is far from over.
As long as a child suffers, our work is not finished. For as these children and their families know too well, time alone does not heal all wounds.
We need a cure. And we need your help to make this happen."
For further information please go to DebRA's website at www.debra.org