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2012 Top-Rated Nonprofit

Foundation for Children With Microcephaly

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Nonprofit Overview

Causes: Health

Mission: To make a difference in the lives of children diagnosed with Microcephaly and other closely-related neurological disorders.

Results: In 2011 we granted a boy's wish to meet his favorite band, Sugarland. We also held our 4th successful convention in June 2012. The top doctors in the field met with families from all over the world for this educational experience.

Geographic areas served: All over the world

Programs: Wish Upon a Star, Operation Star Connect, "We Are Not Alone" biennial conventions

Community Stories

21 Stories from Volunteers, Donors & Supporters

1 TheCHozinOne

General Member of the Public

Rating: 5

This is a great organization. I am a parent of a child who has Microcephaly. My daughter is 6 1/2 and when she was first diagnosed, I couldnt find much information about Microcephaly. Then I found FCM's web site. This is one of the few sites out there, where not only is there information about Microcephaly, but where there is a network to meet up with and talkother families who have kids with Microcephaly. My family has made a lot of great connecting throught FCM and I am thankful to have found this wonderful organization. This is a wonderful organization and I would highly recommend. THank you FCM for introducing us to the Microcephaly World and all those who are in.

Previous Stories
1

General Member of the Public

Rating: 5

This organization is dear to my hear as my daughter has Micro. FCM has been a great place to gather information, meet people that are experiencing the same thing with their children and act as a extended family as people who not only care, but can actually understand what you and your family is going through. This is a great foundation and I would ask that everyone at least become aware of it... And donate if you would like....Thank you

1

Client Served

Rating: 5

A wonderful resource for parents with children with microcephaly. I've found so much support and information through the FCM!

1 Naomi V.

Client Served

Rating: 5

My sister was diagnosed with Microcephaly and this organization has helped our family with so much. We learn so much during the conventions and having a support group with people who live with the same road blocks.

1 Donna110

Client Served

Rating: 5

When we attended our first convention, our daughter was 9 years old and we still had not met any families who were in the same boat as us who were willing to open up and be candid about their daily challenges and how to get support. It's refreshing to know there is a place to visit every other year where we can see our little girl in all stages of her life. We look around and see the 2 year old that used to be our child and they look back at us and see our older child and it gives them hope.
The last time we attended we were waiting to meet with the doctors and I noticed a man feeding his son with a feeding tube. His wife was sitting there eating her salad when her mouth dropped with excitement when I told them my daughter had one for 10 years but now eats by mouth. She said "there's hope?" I was able to give her hope amd tips that could help her! It was awesome!

1 Rhonda8

General Member of the Public

Rating: 5

I have never felt so blessed have found a group like this . It truly has been a blessing to our family!

Previous Stories
1

General Member of the Public

Rating: 5

Our family had never heard of microcephaly until our granddaughter was born with it. We felt so lost. But, we found The Foundation for Children with Microcephaly. I can not tell you how much it means to our family. This group has given us so much HOPE and COMFORT. We have connected with other families that are going through or have be through what we are and have. We discovered We Are Not Alone. More important my granddaughter is Not Alone. She has made friends and so have we.

1

Client Served

Rating: 5

FCM has been the lifeline to me and my family. I read almost every post when I first joined to help me better understand my son's diagnosis. I felt comforted in knowing that other beautiful children were out there with similar diagnosis and needs as my child. The support of other parents helped us through many tough times. The organization did a beautiful job on their website with the information they have shared with all members. I frequently visit the site for new updates and continue to use them as a support and educational base.

1 Shelley L.

Client Served

Rating: 5

FCM is an amazing organization that brings families together that may not otherwise find eachother because Microcephaly is so rare. Families gain the support from eachother. The organization helps us support eachother and share advice and experiences regarding our special needs children. I found the organization many years ago and have enjoyed attending three Conventions. I always look forward to the next one with great anticipation. The long Convention weekends are magical and expert medical professionals are brought in that specialize in Microcephaly. Its amazing to be around families who understand and truly "get it." Thumbs up to FCM for all the hard work they put into the organization, bringing families together for support, granting wishes and putting on the Conventions.

1 Jeff L.

Client Served

Rating: 5

I interact with FCM on a daily basis by using their support services. I've added many friends across the world who represent children, friends and family affected by the rare disorder Microcephaly and it's related diagnoses.

The services provided by this nonprofit have allowed me and my wife to cope with the things we're going through as well as finding and sharing answers and supporting the people in our now expanded family of friends.

The couple responsible for the Foundation have started it out of their own pocket and have a child with micro. They are wonderful and inspiring people to be around and work hard to make sure other families get the support they need.

Previous Stories
2

Client Served

Rating: 5

Before my son was born, I didn't even know what Microcephaly was. When we found out about his diagnosis, the group was one of the first places I found a little comfort. Perhaps the biggest impact the Foundation for Children with Microcephaly has had on myself, my wife, and especially my son, is a bi-annual convention they hold for families. After attending this year's convention my son has started trying to speak, because he connected with children like him and saw what he is capable of. My wife and I learned we are not alone, and have friends all over the US and even around the world. I also found out that it costs $30-40,000 per convention, which is funded mostly by one of the most influential families I've ever met. They shouldn't have to do this alone, but because they are willing (they have a daughter of their own with microcephaly) they have changed life for thousands of people. Because of their work, people all over the world are connected with help, support, and advice from others who understand. Even though microcephaly is more common than people know - little is understood, even by most doctors. Helping get the word out could help get much needed support to other families and more importantly, children affected by this disorder.

1

General Member of the Public

Rating: 5

I attended the conference in Arizona and loved it. The people running the conference were so helpful and kind. Seeing the other kids with microcephally play and have fun together was such an amazing view. My little sister has microcephally and in San Diego she is seen as the different one but with these wonderful families she is just like everyone else. The many group discussions really helped me as well as the restvof my family learn more about microcephally and what to expect in the future. My mother asked our doctors here in San Diego if there were any sipport groups but they didn't know so my mother went online and found this wonderful foundation that has changed our lives.

1 Sheri4

Client Served

Rating: 5

I found Foundation for Children with Microcephaly through the Polymicrogyria network the day before they had their 2012 Convention, which just so happen to be in my home town. Needless to say it wasn't a hard decision to cancel weekend plans to attend the FCM Convention to be able to meet other parents that have children with the same disability as my daughter. The staff is incredibly amazing, extremely organized and on top of everything. The staff members were impressed with my experiences of 18 yrs with Micro and asked if I would speak at the convention. By doing so they waived my daughters registration fee. They didn't have to do that, but they wanted to from their hearts which made me feel special and cared about, like as if I were a family member. The FCM group is a very loving and understanding organization that offers critical information and support that every parent seeks and/or should know for present and future situations that will arise as their child grows and develops. They had available to all parents an opportunity to speak with all the doctors who specialize in this disability as well as 2 lawyers who spoke about Guardianship and Conservatorship which most parents never think about that far into the future. Having these professionals at the convention saved parents a lot of money and a peace of mind "knowing something". I've been to several different family conventions and I can honestly say none of them can compare to what the FCM GROUP had offered as far as organization, time management, savings to families and most importantly the genuine love, caring and warm welcoming to current and new members. The FCM Group made me feel for the first time in 18 yrs, like I was home with my family, where I belong. With all my heart, I love the FCM Group!!

1 Anita V.

General Member of the Public

Rating: 4

It has been a great place to get great resources and to find the help for my son.

1 Louis R.

Client Served

Rating: 5

Helped us to get an important medical diagnosis for our son because they organised the FIRST ever held convention on his birth defect in the world in 2008. Already at the first convention the world top physicians were there. We came from Europe to the US to meet with all those great families and doctors. This year we visited the 4th convention, with again a lot of help from the Foundation for Children with Microcephaly!They make it possible that this birth defect gets more awareness and helped already many families to get more information, which is very hard to get!

1 Jaime8

Client Served

Rating: 5

The foundation for children with Microcephaly (FCM) is one of the most under recognized under funded worthy charities in existence. The owners put their own money to fund the majority of the conferences held every other year to families with this terminal disorder. They provide support, education, and many, many more services to these families. Microcephaly is a common disorder that continues to go unrecognized. The owners (Lewis family) stays in contact and knows each and every one of the families they help by name. I learned so much at the conference on how to care for my special needs little guy. It felt wonderful to meet families that were going through the same struggles we were. The FCM provides several scholarships every year to families that cannot afford these educational seminars. They are also fortunate to have great ties with the doctors leading the research on Microcephaly.

1 Rick E.

Volunteer

Rating: 5

Excellent Non Profit - It is amazing seeing the Families unite together. The support and love that you see happening right before your eyes, the bonding of families sharing their heart felt stories. Did I say how supportive everyone is? It amazes me to see everyone at the conventions create new friendships and bonds that will last a lifetime. Such overwhelming statistics that show that Microcephaly affects a large portion of the worlds population and yet it is still unknown to the majority of the people.

1 Cassandra K.

General Member of the Public

Rating: 5

I have a daughter that has microcephaly and jenni & elyse from the foundation of children with microcephaly have helped our family connect with professionals and other parents by holding a conference for all the families to attend they are also very supportive and will answer questions and take the time to listen to everyone .

1 April15

Client Served

Rating: 5

I was 36 Weeks pregnant when my daughter was diagnosed. This Foundation has given my family a chance to interact and meet other families with similar diagnois'. The doctors at the conventions have helped so much. Just getting to know the other families is wonderful. The Foundation For Children with Micocephaly has been a big support system for my family.

1 Keri4

Volunteer

Rating: 4

I stumbled upon FCM when my son was diagnosed with microcephaly and I was looking for answers and support. It was a really rough period in my life, and FCM helped me through with answers and compassion. In turn, they have helped my son to accept his disorder and feel far less alone by connecting us all via the FCM group, as well as the Microcephaly convention which is held every two years. At these conventions, the top specialists in the "cephalies" speak as well as offer their expertise with each "micro" child there, and other speakers attend as well, educating us in areas that will help us to help our children. Besides emotional support, FCM offers financial help for items to help children with any of the "cephalies" and works to bring awareness of these disorders to the public.

1

General Member of the Public

Rating: 5

The Foundation for Microcephaly is an awesome non profit organization. They assist individuals with Microcephaly, Lissencephaly, and Polymicrogyria. This organization raises money for those in need of medical care, medical supplies, therapies, and all other issues. This organization helps to connect families together who are going through the same issues to have a support group to fall back on. They hold conferences every two years with top doctors coming to discuss new tests and genetics as well as answering questions for those parents who are new to the disability. The conference is helpful in assisting parents to be an advocate for their children with special needs. This non-profit organization offers so much to parents and is a great resource to be in contact with.