Karri and Kev O's Hope for a Cure from NBIA

NBIA DISORDERS ASSOCIATION

We CAN for MPAN

El Cajon, California

Karri and Kev O's Hope for a Cure from NBIA

 

Thank you for visiting our fundraising page!

Our children Karri Ann (age 31) and Kevin Paul (age 27) have been diagnosed with a very rare genetic disorder called Neurodegeneration with Brain Iron Accumulation or NBIA. They have the specific disorder of MPAN*, diagnosed in 2011.

The kids have fought this disorder on their own since their diagnosis. In the past few years we have had our share of challenges with walking, balance and vision problems, as well as other issues.

After attending the NBIA Family Conference in Deerfield this past June, we found it striking that not too much was being done in the way of clinical trials or research due to lack of funding.

We are seeking additional support with fundraising efforts to seek a cure from NBIA and MPAN. The time has come for us to try and do some fundraising to help our children find a cure for this hideous disease.

On January 28, 2018 we are hosting a fundraiser at 115 Bourbon Street in Marionette, IL. We will be featuring the Gina Glocksen Band. Gina Glocksen is a former American Idol contestant. Since Dr. Susan Hayflick, medical geneticist with a longstanding clinical and research interest in the NBIA disorders, called our kids "rock stars" we thought it only fitting to have a "rock concert" fundraiser. If you could find it in the kindness of your heart to attend, and/or donate to this cause or provide a basket for the silent action, we would deeply appreciate it. 

You can also make a donation here by clicking on the green Donate button on the right. Donating is simple, fast and totally secure. It is also the most efficient way to support our fundraising efforts.

Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!

We can be reached at odegen@aol.com or 708-385-7748.

Thank you, 

Christie and Kevin Orzechowski

*Mitochondrial Membrane Protein-Associated Neurodegeneration

 

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