‘Hope for Kush’ raises funds to find cure for FoxG1, a rare genetic condition

By Manju Mittal

A Fundraising event titled ”˜Asha for Kush’ aimed at supporting Kush, a 4-year old boy diagnosed with rare genetic condition, was held on Saturday November 5, 2016 at Glenwood High School, Glenwood. Kush, at the age of 18 months, was diagnosed with the condition and had to go through more than 75 medical tests, Kushagra ”˜Kush’ Singha his full name, became the only child in Sydney with a rare disorder known as FoxG1. Kush’s parents Vivek Singha and Monica Manhas believe many sufferers of FoxG1 are living undiagnosed and hence they are committed to finding a cure for their son, having started the International FoxG1 Australia Foundation to raise awareness and raise funds for medical research for this condition.

Sydney’s talented radio personality Aparna Vats was emcee of the evening as she warmed up the audience with evening that started with the lamp lighting ceremony by honourable guests. The guest of honours included councillors Moninder Singh, Julie Griffith and Mohan Sundar, UIA and Sydney Tamil Manram Representative, Haran Ramachandran, Rorsry Hills Kellyville. Alyse Sue shared journey of the social enterprise Genomix followed by Haran Ramachadran speech about his project Rotary in India.

Through a connection with a well regarded local singers and dancers were able to provide incredible entertainment for this fundraising event. Vinod Rajput ”˜s melodic voice stole everyone’s heart and Ajoy Ghosh delighted the audience with his versatile voice. Priya Das, Indrani Mukherji and Shamanti Rakshit  and  Neil Sengupta  surprised the audience with their amazing and energetic voice. Singers encouraged participation by thean audience in an informal atmosphere thus the listeners felt involved and evening turned out to be quite entertaining one.

A well choreographed dance performance by Meenaxis dance group and Aman Gidda group, got a big applause from the audience. A beautiful and heart touching Kirtan and prayer was performed by Radhika Prasad Das, Kamla Prasad Defi Dasi, Varun and Meira followed by Malobika Bhale’s  Bharat Natyam dance performance, she stunned the audience with her amazing dance moves.

The event was such a success mainly due to the generous and philanthropic people who attended and efforts they put in in the event. No wonder it managed to raise a handsome sum of $5,000. The funds will go towards paying for almost two months of the researcher’s scholarship.

Sponsors and supporters donated not only their time but also several gift vouchers. Sponsors were Gaurav Suri, Digihealth plus, Naresh Mehrok– Naresh Mehrok and Associates,  Raman Chopra – RCA Accountants, Sartaj Natt – FINN Franchise Brokers, Jassi Singh Josh Financial Solutions ”“ Home Loan Specialists. The event was well supported by Sanjay Patel, Patel Brothers, Apsara Beauty vouchers, Helen Lawson, Meenaxi dance school, Simran, Shikha Sharma from Kids mantra, Sridevi Henna artist and Raj Merai.

Volunteers worked together Parashar Desai, Lucky Singh, Balbir Singh,  Guru Dha, Rajesh Merai, Shini Threemurthy, Shamanti, Pooja, Ankita, Ruchira and Saraswati, Ajoy Ghosh and Guriq Sedha for the sound system and caterers Ganesh and Ajay from Glenwood Hub Cafe organised this worthwhile event. Highlight of the evening was Harley Davidson, a pillion ride was very generously offered for raffle by Hardeep Chohan. Harley Hardeep Chohan is now a permanent member of the GoxG1. November is FoxG1 awareness month, the Harley ride is being auctioned once again with bids closing on the 30th November.

Vivek Singha father of young Kush thanked attendees and acknowledged the community, sponsors and supporters who generously donated to make it a great success and special thanks to Shobha Ingleshwar and Roli Shrivastav for their contribution. “FoxG1 Foundation has already set up a research scholarship for furthering the cure for the condition at UNSW”, Vivek Singha said. Monika Manhas mother of Kush added “Kushagra is profoundly delayed and is unable to sit, walk, eat or talk by himself and needs 24/7 support with all his activities”.

However, the couple, who also have three other children, have a strong hope that a cure for the condition, which is caused due to a deletion in a single gene can be found, with gene therapy. They have spoken to immunologists, who are confident that technically a cure is possible. So they have started working with local doctors and researchers and want it started as early as  possible in the hope to find a cure for FoxG1. “Every little bit helps and sincerely hope a cure is found, for Kush and many kids like him who are in the same predicament,” Singha’s said.