Survey for Parents of Children with NF1
Dr. Maria Acosta at Children’s National Medical Center is looking for parents of children with Neurofibromatosis Type 1 in which the parent is still the primary caregiver to participate in a study investigating how they cope with their child’s disorder. You must be English speaking, have at least one child with NF1 and be 18 or over.
Participation takes approximately 1-2 hours to complete and includes responding to online assessments found at http://bit.ly/nf1parenting.
The hope is that this survey will improve the understanding of the experience of NF1 parents and, in the future, assist providers in identifying those parents that need greater assistance and coaching. In the long term, it is hoped that this information will be used to improve the support and resources given to parents of NF1 children.
You can return to resume the assessments at a later time, but please make sure to save the provided web address and user code, as we are unable to retrieve this information. If you have any questions, please contact the study coordinator at .
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I am a veteran with severe ptsd and a single parent to an adult child with NF 1 and it takes everything I have to not give up. I am an absolute emotional wreck and so tired of how immature this 19 year old is, more immature than peers her age and it has always been that way. She is now in college where I thought she would get support with learning but it is a struggle for her to maintain good grades. Her high school never conducted an IEP and medical care has been crap. I don’t know where to turn for help
Karen, We’re sorry to hear of your struggles. Someone will be in touch soon.
My biggest problem I have as a parent of a child with NF1 is not having the right insurance to cover all of my child’s medical needs. In S.C. also not having support groups for my child and myself. His health has become more dangerous and yet I am having a hard time finding state programs to help us provide for all his medical care.
My daughter with NF1 is now 26 and independent. Does that disqualify me from participation in this survey?