Advocacy Committee- ( Nov 2020 onwards)
1. Mr. Samir Sethi – Indian Rett Syndrome Foundation – Chairman Advocacy Committee, (PAG Representative)
He is president since 2014. Father of child diagnosed with Rett Syndrome.
Aggressive awareness campaigns have increased our membership to 350 across the country. Done programs at Delhi, Mumbai, Bangalore, Kolkata etc.
Assisted parents in clinical trials.
Implemented SAMARTH- Program for distributing free medicines to ‘Silent Angels’
Coordinated for Disability Certificates and Insurance for ‘Silent Angels’
Social and psychological support for the families
2. Mr. Anand Shah -Parent Project Muscular Dystrophy – India (PPMD)– Trustee
3. Mrs. Arouba Kabir – Cystic Fibrosis- Member
Mental Health Therapist/Counselor
Founder, Enso Wellness
Graduated in Psychology, Trained in Positive Psychology, CBT, Hypnotherapy, Therapeutic Art based therapies, Yoga and Meditations. With an experience of 7 years in the field, Arouba as a distinguished expert in the field of mental wellness has been contributing to the society in innumerable ways.
Arouba specialises in Relationship issues with self and others, Identity crisis, Trauma, Addiction, corporate lifestyle stresses and chronic illnesses. Arouba also manages support groups for rare Chronic Illness (Adults), Grief and identity crisis’s.
Aouba herself lives with a genetic, progressive medical conditional called Cystic Fibrosis. Bring a chronic illness patient, she has spent a major part of her life since her diagnosis giving back to the society and helping people calm the storms in their head be it through one on one counselling sessions, corporate wellness programs or student certifications.
4. Mrs. Kirtida Oza -Sjogren’s india- Member
Kirtida Oza is the Co-Founder Director of Sjogren’s India, the first patient support group focussing on Sjogren’s syndrome in India. After struggling for over five years, she was diagnosed as suffering from this lesser known, life altering autoimmune condition in 2002. Unable to continue working as a professional Environmental Educator, she decided to devote her time to supporting other patients to live better lives with their illness. Since 2006, she provides education and informal counselling support to patients and their families, writes and speaks to enhance public awareness and represents the patients’ perspective when interacting with different stakeholders nationally and internationally.
She believes that with proper treatment, lifestyle changes and a positive attitude, it is possible to LIVE BETTER with one’s illness.
5. Mr. Lalith Sitharaman – ORDI- Member
Lalith Kumar Seetharaman is an IT professional working as a manager in a Software design services organization based out of Bangalore.
He is a parent of 2 kids afflicted with San Filippo Syndrome (Muco-Polysaccharidosis 3A). He is sensitive to the needs of kids affected with Rare Diseases and at the same time the support required for the parents and care-givers. As a part of ORDI, he shall be active in furthering ORDI’s mission.
6. Mrs. Sarika Modi – IEM Support Charitable Trust- Member
IEM poses a challenging journey for both the child and its parents. I have been involved in helping and assisting parents navigate through this journey. By bridging the gap between the parents and the medical institutions, I have become deeply involved with the IEM Charitable Trust and their parental support groups.
Other than organising events for IEM, I also am a businesswoman. I am the director of Spread Home Products, and by using my skills in the commercial field I am able to assist in the coordination and on-ground work for IEM related cases and seminars.
School : Bal Bharti Public School Delhi
College : Jesus & Mary college with B Com
Diploma : National Institute of Sales & Marketing
7. Mrs. Vaishali Pai – Tamahar- Member
Occupational Therapist (OT)
An Occupational Therapist (OT) by profession and a Gold medalist in Bachelor’s and Master’s degree, with three decades experience working with big names like Spastics Society of India, Mallya Hospital, Vydehi Institute of Rehabilitation and Align Centre.
Vaishali has worked in child and adult rehabilitation in varied situations and facilities throughout her career. As a certified Early Interventionist, she is adept at handling infants and newborns, even as young as 1 week old. Her area of specialties are Pediatric Rehabilitation and Sports Rehabilitation which require different techniques ranging from OT techniques, Neuro Linguistic Programming (NLP), Pranic Healing to name a few. Being a certified NLP practitioner has helped her to master methodologies that are adjutant for remedial teaching, for children who have learning issues, as well as children who may be on the Autism spectrum, hyperactive or have attention deficit issues. Soon, she plans to use not-so-known technique of EMG Biofeedback – that can help children and adults with physical dysfunction due to brain damage.
(List is in alphabetical order)
Committee Activities:
6th Nov 2020 – The committe met for the first time and elected Mr Samir Sethi as a Chairman.
ORDI Advocacy Committee-2.11.20
