you’re not alone. We are here to provide resources and community for you.
Receiving this diagnosis can be overwhelming, difficult to understand, and upsetting. Our Foundation exists to provide you with as many resources and information as possible to help you navigate this new reality. Below you will find suggested next steps to get informed and provide yourself & your medical team with the tools & knowledge to best support you & your family.*
Download & share this Clinical Recommendation document with your medical care provider
Review the videos below for symptoms associated with Gould Syndrome
Connect with other Gould Syndrome families for support & community by joining the private Facebook support page here
Watch the NORD (National Organization of Rare Disorders) video for newly diagnosed rare disease patients here
Direct your medical provider & team of specialists to our website - here are resources for them
Referral to Gould Syndrome Center
Ask for support. Majority of the United States have programs that can offer early intervention services, financial assistance, and in-home services for persons with extra needs - often times at little or no extra cost. Your care provider might be able to provide more information, or your state health department.
*These steps are a guide only and do not replace the guidance & care of your medical team.
Stroke Recognition in Children of All Ages
Learn the signs and symptoms of stroke in children. Utilize this video to help educate the family, caregivers, teachers and anyone involved with direct care of your child.
Infantile Spasms, seizures, & epilepsy
"Infantile spasms, also called "epileptic spasms" or West Syndrome, is a type of epilepsy that tends to affect infants under the age of 2 years, and is characterized by clusters of peculiar seizures. These seizures—termed spasms—are involuntary and usually consist of a brief interruption of behavior, often with lifting and extension of the arms and bending forward at the waist. In many cases, this behavior is accompanied by a rapid and forceful drop of the head. Each cluster typically lasts a few minutes. There are many variations of this pattern. After individual spasms, children often cry. Clusters of spasms most often occur upon awakening, but can happen at any time of the day." Find out more info on their educational website. Not all children who have Gould Syndrome have infantile spasms/West Syndrome, but many do.
Signs & Symptoms to Watch For
Nonprofit Medical Advocacy - Nonprofits experienced with sub-diagnosis' of Gould Syndrome
Alport Syndrome: Alport syndrome is a rare kidney disease that is genetically passed down in families from parents to children, though sometimes it can occur spontaneously and you might be the first one in your family to have it. While it would be extremely rare to have this in addition to Gould Syndrome, it is a Collagen VI issue and related to the kidneys. It is an excellent resource to have for rare disease kidney support.
(Chasa) - Children with Hemiplegia and Stroke Association: Chasa, is the Children with Hemiplegia and Stroke Association. While not all cases of Gould Syndrome have stroke, many do and this website and Association has a plethora of great information for newly diagnosed cases of stroke, management and resources available.
Brain Recovery Project: Brain Recovery Project, is a site supporting post surgical interventions for intractable and drug resistant epilepsy, including a free webinar on IEP’s after brain surgery.
The American Council for the Blind: The American Council for the Blind is a resource dedicated to helping promote independence but also has resources and supports for visual impairments and equipment.
Medical grants & financial assistance (federal)
United Healthcare Children’s Foundation: Provides medical grants for numerous needs for families. There are requirements and restrictions but you can apply online.
The Healthwell Foundation: Provides grants when insurance isn’t enough for children with medical disorder and rare disease treatments.
The Redtree House: Provides grants for families with children with complex medical need and disabilities. It also has a large resource list of other nonprofit grants for families to utilize.
In addition to these grant opportunities, there are also many available at the State level as well. Please refer to your care team for exact grants available in your area. This link may serve as a starting point for further assistance.