The MAGIC Foundation India: TS – Division Overview

Working towards increasing Turner syndrome awareness in India
“Don’t limit your challenges, challenge your limits”

Mission Statement

The Turner Syndrome Division under MAGIC Foundation India is dedicated towards providing resources and support for patients and families of patients with Turner syndrome in India. Understanding the lack of support and unpredictability that often accompanies the diagnosis of a rare condition like Turner syndrome, we hope to lessen the burden of struggling patients through presenting information regarding latest research breakthroughs and clinical guidelines.

Division Head: Isani Singh

Isani is currently a student at Harvard University. She has been interested in Turner syndrome research since 2015 and has been involved with the Turner Syndrome Society of the United States and the International Turner Syndrome Society. After having been disappointed by the lack of Turner Syndrome awareness or support in India, her goal now is to spread her research across India to struggling patients and families of patients with Turner Syndrome through events all across India where patients can meet with other patients as well as physicians.

Read a bit about some of Isani’s accomplishments below.

3rd place at Regeneron Science Talent Search, the world’s most prestigious science fair
March 2018

View Article – >

Published research in The Journal Of The American College Of Cardiology And presented at National Conference
March 2017

Read Abstract
 – >

Presented project at the Research Science Institute at MIT
August 2017

Watch Presentation
 – >

Met President Donald Trump as US Presidential Scholar
June 2018

View Article – >

Presented research at International Turner Syndrome Conference
November 2016

Read Abstract
 – >

Blog post regarding rare disease research
June 2018

Read Post – >

Growth Awareness Day

September 20th is Children’s Growth
Awareness Day.

The MAGIC Foundation India will be conducting several awareness programmes on Growth Awareness.

READ MORE

Growth Disorders In Children

Children fail to grow for a variety of reasons. Hormones, genetics, sleep, nutrition, general health and exercise are all factors for normal growth. If you suspect that your child is not growing normally, you are in the right place!

Congenital Adrenal Hyperplasia

Congenital Adrenal Hyperplasia is an autosomal recessive genetic disorder, which means that it affects males and females in equal numbers, and that it requires both parents to pass on a gene in order for it to manifest as a disease. For a child to be born with any form of CAH, both parents must carry a gene for the disorder.

Growth Hormone Deficiency

Growth hormone (GH) is a protein made by the pituitary gland and released into the blood in brief pulses. The major way that GH promotes growth is by increasing levels of the hormone, insulin-like growth factor-1 (IGF-1), and its carrier protein, IGF binding protein-3 (IGFBP-3), in the blood.

Optic Nerve Hypoplasia

A child with the Syndrome of Optic Nerve Hypoplasia, also known as Septo Optic Dysplasia or DeMorsiers Syndrome, has under-developed optic nerves. The optic nerves carry messages from the eye to the brain. ONH is the single leading cause of blindness in infants and toddlers.

Russell Silver Syndrome

Russell-Silver syndrome (or Silver-Russell syndrome) is a rare genetic disorder characterized by delayed growth in-utero (IUGR) that spares head growth (meaning the newborn has a head size that is large for his body) and ongoing postnatal growth failure.

Small for Gestational Age

SGA (small for gestational age) generally describes any infant whose birth weight and/or birth length was less than the 3rd percentile, adjusted for prematurity (gestational age). Between 3% and 10% of live births each year are diagnosed as SGA.

Turner Syndrome

Turner’s Syndrome occurs in 1 in 2,500 live female births. Approximately 98% of pregnancies with Turner’s Syndrome abort spontaneously and approximately 10% of fetuses from pregnancies that have spontaneously aborted have Turner’s Syndrome.

Do get in touch with us at [email protected]://www.https://www.https://www.https://www.magicfoundation-india.org for any queries or clarifications.</center

We will be only too glad to be of help.

Connect with us!

We have created a Facebook page called Omkar’s Journey with Congenital Adrenal Hyperplasia to chronicle all possible events and scenarios in the life of a child with CAH, with a view to let new parents know what to expect.

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The MAGIC Foundation India Turner Syndrome Division on Facebook

Turner Syndrome Division group on Facebook is a closed group and is for discussion and sharing of information to provide support services for the families of children afflicted with Turner Syndrome. This is a safe place for parents to exchange and seek information that might help them deal with the problem. Note that posts which are not relevant to Turner Syndrome and which are advertisements for sales of products, services or groups will be deleted and the person posting the message will be removed from the group without notice. If you wish to join this group:

➤ Step 1: Search for the group page on Facebook.
  (https://www.facebook.com/groups/turnersyndromesupport.magicindia)
➤ Step 2: Please request to join.
➤ Step 3: Send a message to the Admin or an email to
[email protected] and let us know why you are interested in joining this group.