- Industry
- 2 min read
Progeria awareness in India
The Progeria Research Foundation (PRF) is funding the participation of children from India, who visit the Boston Children’s Hospital in Boston, MA, USA where they will have access to the only known treatment for Progeria.
The Progeria Research Foundation (PRF) is funding the participation of children from India, who visit the Boston Children’s Hospital in Boston, MA, USA where they will have access to the only known treatment for Progeria.
The Progeria Research Foundation had initiated a campaign, to identify, connect with and help find an estimated 60 unidentified children living today in India with the support of MediaMedic Communications, a healthcare communications firm which is a part of the GLOBALHealthPR group.
Meryl N. Fink, President and Executive Director, The Progeria Research Foundation said, “Before we began our proactive public awareness efforts in 2009, we knew of only one child in India living with Progeria.Today we know of 14 children in India – a remarkable increase! We know there are many more though, and MediaMedic is a wonderful partner in the effort to find these other children.”
Nihal Bitla, who was the first kid found helped build a lot of awareness and has been the face of the Progeria campaign, #Finding60inIndia for a long time. The Facebook page & Twitter handle of Team Nihal has a lot of fan following and has considerable coverage by the health media.
Audrey Gordon, President and Executive Director, PRF said, “Our search for more children with Progeria continues. So far fourteen children from India have been identified and helped by The Progeria Research Foundation. We need to continue to find as many children as we can. All children with Progeria must have the opportunity to benefit from our efforts to find treatments and a cure.”
Dr Parag Tamhankar, medical geneticist and Divisional Head at Genetic Research Center, National Institute for Research in Reproductive Health, Mumbai, India said, “Heart problems or strokes are the eventual cause of death in most children with Progeria. The average life expectancy for a child with Progeria is about 14 years, but some with the disease die younger and some live 20 years or longer. 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 different ethnic backgrounds”.
The just concluded Hats On Progeria campaign worldwide scheduled on the 6th April 2018, received a good response in India, with a lot of people wearing hats, sharing pictures & supporting Team Nihal and the PRF.
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