Cooling Off for CHM
Tax deductible
I am trying to raise money for a disease called Choroideremia(CHM) because my 2 sons and my 2 brothers are going blind. Please help me save their sight. CHM has no cure or treatment at the moment, but are we going to change that! Please join our fundraiser "Cooling off for CHM" and spread the word about CHM(Choroideremia). We are challenging you to....
1) Record yourself cooling off this summer (be creative)
2) Post your video online to ALL social media outlets that you subscribe to, (fb, snapchat, insta, twitter youtube, etc) and challenge 3 friends to cool off for CHM.
3) DON'T FORGET TO [email redacted] "Cooling off for CHM".
Please know that every dime we receive will go directly to finding treatment and/or a cure.
Thank you for helping us make a difference! We couldn't do it without you.
Here's our story....
My grandfather was blind, but we never really knew why. It was the unspoken understanding...Pop was independent didn't want or need anyone's help. He embraced life with humor and never complained, so we all just went about our lives.
That was until about 15 years ago when my teenage brother went for a doctor's appointment to diagnose the migraine headaches he had been experiencing. Instead, the appointment turned into a diagnosis for one of the rarest blindness diseases in existence.
CHM is a genetic disease, so after Kevin was diagnosed, then came my other brother EJ. Next, it was my turn to be diagnosed as a carrier. We were told that as a carrier, I had a 50/50 chance of passing the gene on to my children. Dreaming of a family, my husband and I chose to roll the dice and have 2 children. Both of whom were later diagnosed to have Choroideremia.
Choroideremia (CHM) is a rare inherited disorder that causes progressive vision loss, ultimately leading to complete blindness. The first symptom is generally night-blindness, followed by loss of peripheral vision. Picture your eyes going through a tunnel as it closes in on you until you are in total darkness. This is the life of a CHM'er.
CHM is progressive, so we are all feeling an overwhelming sense of urgency to find a cure or treatment. Time is running out for CHM'ers, we thank you for your help!
To learn more about CHM go to: CURECHM.ORG
1) Record yourself cooling off this summer (be creative)
2) Post your video online to ALL social media outlets that you subscribe to, (fb, snapchat, insta, twitter youtube, etc) and challenge 3 friends to cool off for CHM.
3) DON'T FORGET TO [email redacted] "Cooling off for CHM".
Please know that every dime we receive will go directly to finding treatment and/or a cure.
Thank you for helping us make a difference! We couldn't do it without you.
Here's our story....
My grandfather was blind, but we never really knew why. It was the unspoken understanding...Pop was independent didn't want or need anyone's help. He embraced life with humor and never complained, so we all just went about our lives.
That was until about 15 years ago when my teenage brother went for a doctor's appointment to diagnose the migraine headaches he had been experiencing. Instead, the appointment turned into a diagnosis for one of the rarest blindness diseases in existence.
CHM is a genetic disease, so after Kevin was diagnosed, then came my other brother EJ. Next, it was my turn to be diagnosed as a carrier. We were told that as a carrier, I had a 50/50 chance of passing the gene on to my children. Dreaming of a family, my husband and I chose to roll the dice and have 2 children. Both of whom were later diagnosed to have Choroideremia.
Choroideremia (CHM) is a rare inherited disorder that causes progressive vision loss, ultimately leading to complete blindness. The first symptom is generally night-blindness, followed by loss of peripheral vision. Picture your eyes going through a tunnel as it closes in on you until you are in total darkness. This is the life of a CHM'er.
CHM is progressive, so we are all feeling an overwhelming sense of urgency to find a cure or treatment. Time is running out for CHM'ers, we thank you for your help!
To learn more about CHM go to: CURECHM.ORG
Organizer
Kristen Scott Ging
Organizer
Huntington Station, NY
Choroideremia Research Foundation, Inc.
Registered nonprofit
Donations are typically 100% tax deductible in the US.
