Basic Organization Information
Children Against Hyperinsulinism
- Also Known As:
-
Congenitalhikids.org
- Physical Address:
-
Round Rock, TX
78665
- EIN:
-
26-4237067
- Web URL:
-
www.congenitalhikids.org
- Blog URL:
-
congenitalhikids.wor...
- NTEE Category:
-
G Disease, Disorders, Medical Disciplines
-
G40 Diseases of Specific Organs
-
G Disease, Disorders, Medical Disciplines
-
G98 Pediatrics
-
G Disease, Disorders, Medical Disciplines
-
G99 Diseases, Disorders, Medical Disciplines N.E.C.
- Year Founded:
-
2009
- Ruling Year:
-
2009
Login or register to see this organization's full address, contact information, and more!
Mission Statement
Our mission is to increase awareness of Congenital Hyperinsulinism of the public and of the medical personnel across the United States. Your donations will touch others lives by supporting education programs and by providing emergency assistance for infants and adults affected by this disease .
Expert Reviews
There are no Expert Reviews for this organization. Learn more about
TakeAction@GuideStar.
Impact Statement
Congenital hyperinsulinism (excessive insulin production) is the most common cause of persistent or recurring hypoglycemia (low blood sugar) in infancy. Many infants and children affected with any of the various forms of hyperinsulinism have recurring, severe episodes of hypoglycemia both before and after diagnosis that can cause seizures, brain damage and developmental delay. Since undiagnosed hyperinsulinism or failure of treatment for hyperinsulinism significantly increases the risk of mental retardation and permanent brain damage, prompt diagnosis and aggressive treatment are crucial in the fight against this disease.
Because hyperinsulinism is a rare condition, only occurring in approximately 1/25,000 to 1/50,000 births, few facilities have the equipment and specialists necessary to diagnose and offer the best treatment for this disease. Currently, the Congenital Hyperinsulinism Center at Children’s Hospital of Philadelphia (CHOP) is the only center in the United States that performs the PET scan test in infants and children to help identify focal or diffuse hyperinsulinism.
If a child requires surgery for hyperinsulinism, parents can expect to stay at the hospital for at least one month. Children with hyperinsulinism require extra care at home in the form of blood sugar monitoring, maintaining a regular feeding schedule, administering medications and glucagon. These prolonged hospitalizations and intense medical regimens can be stressful for the parents and families of children with hyperinsulinism.
A patient inspired Congenital HI Kids. Like other infants born with congenital hyperinsulinism, he was born into the fight of his life. He and his family face many challenges in his fight. Congenital HI Kids was formed to help him and other children like him in their fight against this disease.
Revenue and Expenses
Login or register to view this information.
Financial Statements
Subscribe to GuideStar
Premium to view this information, if available.
Chief Executive
Angela Johnson
Term:
Since
Feb
2009
Chief Executive Profile:
Angela Johnson – President
Mother to three children, all without Hyperinsulinism
Angela has spent the last 8 years as Telecommunications Operator for different Law Enforcement Agencies. She is now a full time mother to three beautiful children, which she home schools. She has created a home school group, Round Rock Home School Connection, where other home schooled children can come together to continue developing their social skills and work on group projects. She has volunteered with First Baptist Church of Round Rock to serve meals at the Ronald McDonald House of Austin. In addition she has served on several church committees which have impacted her local community such as delivering meals and other sundry items to the homeless. Angela has worked tirelessly to create Congenital HI Kids in order to help families connect, get support and education about hyperinsulinism. She is directly involved in the day to day operations of Congenital HI Kids.
Officers for Fiscal Year
Subscribe to GuideStar
Premium to view this information, if available.
Highest Paid Employees & Their Compensation
Subscribe to GuideStar
Premium to view this information, if available.
Program:
Educational Awareness
- Budget:
-
$10,000
- Category:
-
Education
- Population Served:
-
General Public/Unspecified
-
Adults
-
Female Infants/Babies (under age 5)
Program Description:
2010Hyperinsulinism walk and awareness conference.
Program Long-Term Success:
We would like to educate all medical personal of this disease to make it easier for parents to explain this very rare disease.
Program Short-Term Success:
Parents of children whom are affected by this disease will have medical professional acknowledge this disease and began treatment as soon as they walk into the ER and explain they need an Iv drip to bring up baby sugar
Program Success Monitored by:
Interview with staff and parents of local hospitals across Texas
Program Success Examples:
Funding Needs
We are requesting your support!
Thousands of people in every state are affected by a rare disease,
whether it is themselves, a friend, or family member. Research
of these rare conditions is important because it adds to a general
understanding of more common diseases while promoting safe
and effective treatments.
There is currently only one US hospital specifically equipped to
diagnose and treat patients with Congenital Hyperinsulinism.
We are seeking to assist in the creation of a second HI center to
be located at the Cook Children’s Medical Center in Fort Worth,
Texas.
Congenital Hyperinsulinism, like many rare diseases, is a
genetic condition. Congenital Hyperinsulinism is
characterized by an unexplained overproduction of insulin. Our
goal is to help ease the burden faced by so many families
dealing with this rare illness while establishing a set medical
protocol for newborn screening for this disease.
We are asking our Texas community to support Cook Children’s
Medical Center and this pioneering endeavor to provide medical
expertise, instruction, and advocacy.
Volunteer Needs
We are seeking cash as well as non-cash donations for our special event:
Hotel expenses and accommodations
Air fare/travel assistance for out of state families and children with Congenital Hyperinsulinism
Advertising
Printing and reproduction
Taxes and fees associated with city law enforcement
Staffing and associated costs
Food and beverages
Fun activities and entertainment for the children and their families
Conference room and equipment
Request for In-Kind Contributions