| Support group for MPS & Gaucher - Activities |
| |
|
| |
| 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. |
|
