How to Help

Many have asked me how and if they can help. I've even had someone offer to help us financially.

Alhumdullilah, we do not need financial assistance, and the offer was very kind. It touched me that someone would even offer. The gesture did not fall on deaf ears, we are grateful to have the friends and family that we do.

All we need is prayers, love, and positivity sent our way. With an emphasis on prayer.

Many of you have already helped us and may not have even realized that you have. For that, we thank you sincerely. Sometimes the smallest of gestures can make a big impact.

If you would like to still help others with LCA or other visual disorders, here are some links to some organizations and groups we like. Some offer research, funding,  procedures, education and information for all sorts of conditions.

The foundation for fighting blindness - www.blindness.org

They have been raising funds and awareness for a series of eye disorders

The Foundation for Retinal Research - www.tfrr.org

This foundation has been raising funds LCA research.

The Children's Hospital of Philadelphia Foundation - http://giving.chop.edu/

CHOP is personally funding the LCA research being done on Nomi, through donations and such. 

They also treat ill children from around the world.

Al-Mustafa Welfare Trust - www.almustafatrust.org

This organization hosts free eye camps around the world where they perform exams and
 procedures for those who would normally not have access to treatment.

The Gavin R. Stevens Foundation - www.gavinsfoundation.org

Gavin is a little boy very close in age to Nomi. Gavin also has LCA, caused by a different 
gene, NMNAT1. Recently discovered, this gene is currently not being studied. Gavin's parents hope that research begins soon  and are collecting donations to help fund this research.

They also have two Facebook pages, Gavin's Groupies and Lets Cure LCA.

Bike the Basin - www.bikethebasin.org
The Smedley family has started a foundation to bring more research to LCA caused by CRB1. 
Michael and Mitchell are two brothers who both have LCA due to CRB1. Both brothers loved biking, 
and bike the basin is an annual event meant to raise awareness and fund research. 

The Curing Retinal Blindness Foundation - www.crb1.org
Another foundation for LCA, specifically focused on CRB1 research.

Orbis - www.orbis.org
Orbis is a non profit group of physicians who fly around the world in a flying eye hospital, 
teaching local doctors how to treat patients and do procedures. This is where one of my oldest friends, Dr.
Emile Sharifi works. 

Sometimes help comes in the form of a donation, other times it is simply 
spreading awareness and sharing knowledge. Information can be powerful. 

Thanks again guys, love you all.