President
My name is Dana and I am a resident of Ontario, California. My son Daniel was diagnosed with NF-1 when he was 9 months old. Our journey has been long and difficult but the support we have found in other families has been vital in our lives. I have been raising awareness and funds to support research and families since 2009 and am excited to begin a new journey as I reach further in my goal to support families with NF. Together we can make a difference!
Secretary
David Iniguez is a resident of Ontario, California and has been helping to raise awareness since his nephew was diagnosed in 2009.
Treasurer
Mina Escamilla lives in Corona, California. She has a daughter who was diagnosed with NF-1. She is a business banker by trade and has an AMAZING family who supports them in their efforts to support NF families and raise awareness.
Media Relations / Photographer
Jess Robertson has done amazing things to help bring awareness to NF and raise money for research over the last 3 years. She has donated her time to photograph many events over the last three years. Between Jess and her husband, Stephen they are the most awesome couple you will ever meet and have the biggest hearts in the world. We are excited to have Jess as part of our team!
Logo Wear
Sarah Ruiz is a resident of Fontana, California. She has a truly strong and inspirational son who was diagnosed with NF-1. She has done many events in the past to help raise money for research. Sarah is a soccer mom who is excited about donating her time to raise money to support NF families. Thank you Sarah.
Covina Chapter - Event Committee Leader
Susan Miller head the event committee and volunteers out of the Covina Chapter. She has been essential in helping to schedule and seek out sponsorships for events in the local area. Her grandson has NF so she is no stranger to the struggles families face.
Susan Miller head the event committee and volunteers out of the Covina Chapter. She has been essential in helping to schedule and seek out sponsorships for events in the local area. Her grandson has NF so she is no stranger to the struggles families face.
Where it all began...
Here is a little of my story:
My journey began when my son was only a few months old. He was fussy, never slept, didn't eat well, and brown marks kept appearing on his skin everyday. After a lengthy wait, many appointments and an MRI, we were told our son had Neurofibromatosis. Something I couldn't say or spell, little own digest. I spent countless hours researching, making connections with vital people who became my lifeline, and trying to find out what our life would now consist of. It became apparent by the time he was a year old, that our son was not only struggling with NF but was, as our specialists kept repeating, "an unusual case of NF". Our son never followed the "norms" within NF. And now 4 years later, he continues to be an "exception". He has an optic chaism glioma, epilepsy, peripherial and depth perception deficits, gross and fine motor delays, behavioral issues, insomnia, hypotonia, apraxia, GI issues, dysphasia and autonomic dysfunction (temperature control issues). I have been through more struggles in the last four years than any parent should have to. One of those has been the challenge of raising a large family on one income. With the laundry list of difficulties comes many specialist. This meant I could not continue to work as a teacher and take care of my son. There have been times where a doctor has suggested we see an out of area specialist but we could not, it was suggested we began an alternative therapy but we could not, and there were many times where I wished there was someone to turn for help. Over these past 5 years I have found that the connections we make with other NF individuals, families, and doctors are so important to our survival, and through them countless doors have been opened for us. It is because of this that I have been offered the support to start a foundation where we can share what we have learned, share our laughter and our tears, help educate other parents, form everlasting bonds, and make it our goal to bring the NF community together. I may not be able to take away my son's NF, but I can help others as they struggle and grow. So this is where my path takes me... filled with hope, friendship, and a new beginning.
My journey began when my son was only a few months old. He was fussy, never slept, didn't eat well, and brown marks kept appearing on his skin everyday. After a lengthy wait, many appointments and an MRI, we were told our son had Neurofibromatosis. Something I couldn't say or spell, little own digest. I spent countless hours researching, making connections with vital people who became my lifeline, and trying to find out what our life would now consist of. It became apparent by the time he was a year old, that our son was not only struggling with NF but was, as our specialists kept repeating, "an unusual case of NF". Our son never followed the "norms" within NF. And now 4 years later, he continues to be an "exception". He has an optic chaism glioma, epilepsy, peripherial and depth perception deficits, gross and fine motor delays, behavioral issues, insomnia, hypotonia, apraxia, GI issues, dysphasia and autonomic dysfunction (temperature control issues). I have been through more struggles in the last four years than any parent should have to. One of those has been the challenge of raising a large family on one income. With the laundry list of difficulties comes many specialist. This meant I could not continue to work as a teacher and take care of my son. There have been times where a doctor has suggested we see an out of area specialist but we could not, it was suggested we began an alternative therapy but we could not, and there were many times where I wished there was someone to turn for help. Over these past 5 years I have found that the connections we make with other NF individuals, families, and doctors are so important to our survival, and through them countless doors have been opened for us. It is because of this that I have been offered the support to start a foundation where we can share what we have learned, share our laughter and our tears, help educate other parents, form everlasting bonds, and make it our goal to bring the NF community together. I may not be able to take away my son's NF, but I can help others as they struggle and grow. So this is where my path takes me... filled with hope, friendship, and a new beginning.