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Frequently Asked Questions

What can you do to help children with Progeria?

The Progeria Research Foundation
Make a financial contribution. Donations are needed to continue the vital work of PRF. No donation is too little or too big – every dollar counts in our fight for a cure! Donate your time. Volunteers are also important to PRF’s success.

What is PRF doing to help children with Progeria?

The Progeria Research Foundation
The Progeria Research Foundation funds medical research aimed at developing treatments and a cure for Progeria. PRF also has its own Cell & Tissue Bank that provides the biological materials researchers need to conduct their experiments. The PRF Cell & Tissue Bank was instrumental in the recent discovery of the Progeria gene. Cell lines from the PRF Cell Bank were essential to the experiments that led to the Progeria gene discovery.

What is Progeria?

The Progeria Research Foundation
Hutchinson-Gilford Progeria Syndrome (“Progeria”, or “HGPS”) is a rare, fatal genetic condition characterized by an appearance of accelerated aging in children. Its name is derived from the Greek and means "prematurely old." While there are different forms of Progeria*, the classic type is Hutchinson-Gilford Progeria Syndrome, which was named after the doctors who first described it in England; in 1886 by Dr. Jonathan Hutchinson and in 1897 by Dr.

How many children in the world are diagnosed with Progeria?

The Progeria Research Foundation
of February 2006, there are 42 children living in 20 different countries who have been diagnosed with Progeria; however we believe that there are more children who have this condition, but have not yet been diagnosed.

How common is Progeria?

The Progeria Research Foundation
Progeria has a reported incidence of about 1 in 4 - 8 million newborns. It affects both sexes equally and all races. In the past 15 years, children with Progeria have been reported all over the world, including in Algeria, Argentina, Australia, Austria, Canada, China, Cuba, England, France, Germany, Israel, Italy, Mexico, the Netherlands, Poland, Puerto Rico, South Africa, South America, South Korea, Switzerland, Turkey, the US, Venezuela, Vietnam and Yugoslavia.

What are the features of Progeria?

The Progeria Research Foundation
Although they are born looking healthy, children with Progeria begin to display many characteristics of accelerated aging at around 18-24 months of age. Progeria signs include growth failure, loss of body fat and hair, aged-looking skin, stiffness of joints, hip dislocation, generalized atherosclerosis, cardiovascular (heart) disease and stroke. The children have a remarkably similar appearance, despite differing ethnic backgrounds.

What is the cause of Progeria?

The Progeria Research Foundation
HGPS is caused by a mutation in the gene called LMNA (pronounced, lamin – a). The LMNA gene produces the Lamin A protein, which is the structural scaffolding that holds the nucleus of a cell together. Researchers now believe that the defective Lamin A protein makes the nucleus unstable. That cellular instability appears to lead to the process of premature aging in Progeria. PRF was the driving force behind finding the gene responsible for Progeria.

How is Progeria diagnosed?

The Progeria Research Foundation
Now that the gene mutation has been identified, The Progeria Research Foundation has created a Diagnostics Testing Program. We can now look at the specific genetic change, or mutation, in the Progeria gene that leads to HGPS. After an initial clinical evaluation (looking at the child’s appearance and medical records), a sample of the child’s blood will be tested for the Progeria gene. For the first time ever, there is a definitive, scientific way to diagnose the children.

Do you help all children?

Locks of Love
Yes, we provide hairpieces to children 18 years and younger in the US and Canada regardless of race, creed, or religion.

Do the children participate in school activities, or are they limited because they have Progeria?

The Progeria Research Foundation
Children with Progeria are able to participate in all the same educational programs and sports activities as other children. With the exception of having Progeria, these children are just like every other child. Most have no special capacities or limitations other than those that their shorter stature and perhaps stiff joints cause for some activities.

What does Progeria have to do with aging?

The Progeria Research Foundation
Children with Progeria are genetically predisposed to premature, progressive heart disease. Death occurs almost exclusively due to widespread heart disease, one of the leading causes of death worldwide.+ As with any person suffering from heart disease, the common events for Progeria children are high blood pressure, strokes, angina (chest pain due to poor blood flow to the heart itself), enlarged heart, and heart failure, all conditions associated with aging.

Is Progeria passed down from parent to child?

The Progeria Research Foundation
HGPS is not usually passed down in families. The gene change is almost always a chance occurrence that is extremely rare. Children with other types of “progeroid” syndromes which are not HGPS may have diseases that are passed down in families. However, HGPS is a “sporadic autosomal dominant” mutation.

I'm doing a school report on Progeria, can you help me get more information on this subject?

The Progeria Research Foundation
In addition to finding the cause, treatment and cure for Hutchinson-Gilford Progeria Syndrome, part of our mission is to promote public awareness of this disease. By doing a report on Progeria, you are helping us accomplish that part of our mission. Thank you, we're glad to help! Before you read any further, please visit our Frequently Asked Questions section to learn more about Progeria. Other sections you may find helpful are The Connection to Other Diseases , and The Science Behind Progeria.

What are some of the medical conditions of the children you help?

Locks of Love
Most of our recipients suffer from alopecia areata. Others have experienced hair loss from radiation therapy and chemotherapy, severe burns or trauma, and various other genetic and dermatological conditions. View Causes of Hair Loss.

How do you teach/help your children to care for their glasses?

Children's Eyeglasses and Amblyopia FAQ
Most parents suggested that I clean Morganne's glasses for her. They also suggested that Morganne concentrate on not breaking or losing her glasses. People also suggested a spare pair for when she (inevitably) breaks or loses them. Morganne's glasses go in a special place and, so far, she has been very good about putting them back where they belong when she takes them off. One person suggested scratch-resistant and unbreakable glasses.
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