Support group for MPS & Gaucher - Activities
Multispeciality MPS clinic - January 2014

The annual Multi Specialty clinic for MPS Support group members this time saw more children attending the clinic. “More” sometimes is not welcome says Dr. Sujatha Jagadeesh, Mediscan’s Head of the Department of Genetics.  In total 65 children suffering with deleterious MPS and ML are benefitted by the clinic and needless to say the clinic had to be extended for 3 days.  Listening to their woes and pains which could not be dramatically changed by treatment was taxing, yet all the doctors maintained a graceful smile throughout consultation and counselling. On behalf of all team members,   FCRF commends all the doctors for their service.

Multispeciality MPS clinic - Year 2012

Since it was decided to review MPS children according to the types- on different days, on 26th MPS - Type IV (Morquio) children alone were reviewed. Children were reviewed by Expertise in different fields. They were examined thoroughly and action plan was decided according to the needs of each child. Specialists had dedicated their time and experience for the noble cause. The staff, parents and volunteers together helped in conducting the clinic successfully. 30 children were reviewed on that day. Their requirements like Wheel chairs (powered/ mechanical), surgical procedures were arranged through FCRF and further more can be achieved through philanthropic contributions

The ANNUAL FOLLOW UP for MPS- Type I, II, VI and for POMPE disease are planned on June 8th & 29th respectively. The clinics are arranged in such a way that each child is taken cared individually.

FCRF thanks the following network of hospitals & diagnostic centers in Chennai for offering various facilities at free / concession to our members.
 MRI / CT Scans Chennai MNRI Scans Pvt. Ltd.
 X-Rays Canray Health Alliance Private Limited
 Sundaram Medical Foundation Pulmonary Function Test
 Vijaya Health Centre Nerve Conduction Velocity & Visual Evoked Potential tests
 Mediscan Systems Ultrasound of Abdomen, ECHO
 Meenakshi Dental College All dental treatments
 Madras ENT Res. Foundation Auditory evaluation / Sleep study / Surgical intervention /
Pulmonary Function Test
Visit by Metabolic Specialists
Dr. Ashok Vellodi, Metabolic Specialist, Great Ormand Street Children's Hospital, UK has been the guiding force to the support group team.
Dr. Uma Ramaswamy
, Consultant Metabolic Paediatrician, Addenbrookes Hospital, UK has also been providing special consultation for children with rare metabolic disorders including MPS during her visits to Chennai.
FCRF is indebted to both NRI doctors for sparing their valuable time and adding quality to support group services extended to the affected children
Contributions from Genzyme Corporation-USA
Dr. Margarita Jimenez, MD, CEO Marketing of Genzyme Asia Ltd has been instrumental in facilitating the diagnostic confirmation of the disease totally free of cost in the affected. This was a far fetched dream to most of our members due to the exorbitant costs involved & the unavailability of comprehensive testing facilities in India. Now almost all members enrolled have a confirmed diagnosis. Thanks to Genzyme Corporation & Dr. Wuh Liang Hwu & his team at the National Taiwan University Hospital who are conducting the tests on the samples that are sent periodically. Without their support this would not have been possible. Diagnosis has facilitated the follow up of the patients with specific protocols.
The Support group also owes its thanks to Dr. Micheal Fietz, Head , National Referral Laboratory, Women's & Children's Hospital, North Adelaide, Australia for getting the diagnostic confirmation free of cost for various types of MPS 3.
LSD Symposium
 FCRF team cherishes Dr. Ute Stolze's visit at the Special Clinic by Dr Ashok Vellodi on 13th July '07& at the LSD Symposium hosted by Fetal Care Research Foundation the following day. The support group team felicitated the MPS faculty with pride & gratitude for the sustained support.

Dr. Ute Stolze is the Vice-President and General Manager of the Eurasia Division of Genzyme Corporation. She was impressed by the commitment of the Support Group team & the rapport it has established with the member families.
A Dream Comes True!!! Enzyme Replacement Therapy (ERT)

Genzyme Corporation has magnanimously come forward to offer Aldurazyme, the enzyme marketed by the company to patients with MPS Type I (Hurler Scheie/Scheie) disorder. At present, ERT is given to 3 of the member patients of the support group through India Charitable Access Program (INCAP) under the auspices of Genzyme, totally free of cost. ERT is facilitated to all Hurler patients of the support group after evaluation.

Genzyme has extended their support through charity programme - INCAP for two more types of LSD'S Gaucher disease and Pompe disease.

CEREZYME is the enzyme provided by Genzyme for ERT in Gaucherdisease and MYOZYME for Pompe disease. Around 17 children with Gaucher disease and 4 children with Pompe disease, are receiving ERT through this charity programme and under the medical guidance from FCRF. The treatment for these children is also life long and free of cost . Genzyme is magnanimously contributing for the cause .

The beneficiaries are a blessed lot to avail the fruits of rapid scientific advancement, which remained a dream until a few years ago. It is encouraging to see the happiness exhibited by the families on the symptomatic improvements in their wards.

Efforts are on to procure enzymes/drugs that are available now in the West for MPS Type II & VI on compassionate grounds to improve the quality of life of the affected.