A Note from the Founder & CEO...
Welcome to the Foundation for Children with Microcephaly! Microcephaly is a neurological disorder where
the distance around the largest portion of the head (the circumference) is less than it should normally be in
an infant or a child. The condition can be present at birth, or can develop within the first few years.
Microcephaly means small (micro) head (cephaly). The most difficult thing that we have found is each and
every case of Microcephaly is different. Some children have mild to moderate delays and others have
severe delays. Most of the time there is no way to know how your child with Microcephaly will develop. So
the only thing that we as parents can do is just wait and take life day by day.
At the beginning of 2009, I was delighted to announce that the Foundation for Children with Microcephaly
was expanding. We now not only help persons diagnosed with Microcephaly, but also help children
diagnosed with Lissencephaly (whole or parts of the surface of the brain appear smooth), Polymicrogyria
(many small folds on the surface of the brain), and other closely related neurological disorders.
My goal, when starting this organization, was to raise enough funds to help children diagnosed with
Microcephaly. Together, as a nonprofit organization, we have met and exceeded that goal by expanding
and also helping persons with other closely related neurological disorders to have the best life possible too.
Medications, wheelchairs and other necessities can cost prices that average people cannot afford.
Insurance companies do not always cover everything, including the necessities, so the children are left to
suffer. A portion of the funds that we raise are used to help the children acquire the things that they need
FCM holds a biennial convention (We Are Not Alone) for families who have children & adults diagnosed with
Microcephaly, Lissencephaly, Polymicrogyria and other closely related neurological disorders. Our biennial
conventions are unlike any other! "We Are Not Alone" is unique and focused on the families gaining
knowledge of their child's disorder, meeting with the top physicians studying these disorders, getting
answers to questions that have gone unanswered for years, providing support for the children and adults
and making the families understand that they truly are not alone. It is very easy for us as parents to feel like
we are the only ones in the world with a child who has Microcephaly, Lissencephaly, Polymicrogyria or other
closely related neurological disorders (due to lack of awareness) and
we need to know that we are not alone.
The Foundation for Children with Microcephaly is the only 501(c)(3) nonprofit organization in the United
States dedicated to helping children and adults diagnosed with Microcephaly. Polymicrogyria,
Lissencephaly and other closely related neurological disorders often get overlooked as well. We are
dedicated to helping all of our special stars to progress, thrive and succeed in life! We are here to help all
of our special stars to live the best, most comfortable life possible. We are constantly screaming at the top
of our lungs to raise awareness of these under-recognized disorders -- I will not give up or stop -- one day
Microcephaly, Lissencephaly, & Polymicrogyria will be household names that everyone knows the meaning
to. Microcephaly affects 2 - 2 1/2% of the entire population (which is far more common than other well-
known disorders) yet it continues to be overlooked in children all over the world for months and even years.
Please help us spread the word about these neurological disorders, the world needs to know!
Thank you all for your support!
Founder/CEO/Mother of Kaylee Alex Lewis (7 years old - Microcephaly, Epilepsy, ADHD, Sensory
Processing Dysfunction, Stronger than the Incredible Hulk, my #1 Adorable Star and Hero)
Thank you Kaylee, for teaching me what is important in life, for teaching me about love and life, for being my
hero, for your strength, smiles, knock you down hugs and kisses & for everything else you have taught me.
Thank you for inspiring me to start this organization and letting people know that they are not alone.
Kaylee, you have helped me help so many families, you are my hero, MY STAR.
What We Do...
The charitable purpose of the Foundation for Children with Microcephaly (also known as FCM) is to provide
persons diagnosed with Microcephaly and other closely related neurological disorders the necessities to
progress and thrive in the following ways:
FCM’s primary activity will be to hold a biennial convention for persons diagnosed with Microcephaly (and
other closely related neurological disorders) and their immediate family members. This biennial convention
gives families of persons diagnosed with Microcephaly (and other closely related neurological disorders)an
opportunity to learn more about their child’s disorder and new ways to help their child progress. They will
also be able to listen to/meet with leading physicians and researchers who specialize in Microcephaly (and
other closely related neurological disorders). This convention will provide information and support for both
Microcephalic (and other closely related neurological disorders) persons and their families.
FCM will maintain a Web site (http://www.childrenwithmicro.org & http://www.microcephaly.org) that will
provide information for new parents (and other immediate family members) with children who have been
diagnosed with Microcephaly (and other closely related neurological disorders). The information will include
the definition of Microcephaly (and other various closely related neurological disorders), answers to
frequently asked questions, pictures/stories of other children diagnosed with Microcephaly (and other
closely related neurological disorders), and most importantly support and email addresses/phone numbers
to contact other parents that have been or are in the same situation. When parents find out that their child
has a neurological disorder it is a life changing event. Many people feel alone and the web site will provide
help, support, and teach them how to cope with having a child with a disability. The parents are their child’s
advocate – therefore they need to be comfortable with their child’s disability in order for the child to
Brochures will be prepared and distributed to immediate family members with children who are diagnosed
with Microcephaly (and other closely related neurological disorders). The brochures will provide vital
information on how to obtain services for their child as well as where to go for support.
Volunteers and employees representing FCM will make visits to new parents with children who have been
diagnosed with Microcephaly and other closely related neurological disorders throughout the United States.
At the visits, the FCM representatives will answer questions, provide vital information and be there to
support the parents at this devastating time in their life.
FCM will also provide persons throughout the United States (diagnosed with Microcephaly and other closely
related neurological disorders) with medications, medical equipment/supplies, and therapies (including, but
not limited to: physical, occupational and speech) that are unaffordable at the time of need. FCM will
acquire such necessities from contributions made to the public charity by private parties, the general public
The Foundation for Children with Microcephaly will continue to raise awareness of Microcephaly (and other
closely related neurological disorders) and continue to actively participate in research.
The Foundation for Children with Microcephaly will never lose hope that one day we will find a cure, not only
for Microcephaly, but for all of the other closely related neurological disorders as well!