Posted - February 2019 in HSPRF News
Owed a huge debt of thanks
Three people who stuck their hand up to volunteer for the Foundation, despite not knowing anyone or anything about HSP, form the backbone of Foundation operations and without whom we simply could not get by.
Isaac has been with us for more than 10 years. He created and looks after the website, plus email and cloud server systems. Ryan who created and developed the contacts management system that is the lifeblood of contact with the HSP community has contributed for the last nine years. And Jay who developed and implemented our financial accounting system and has audited and prepared our Annual Financial Reports for the past six years.
We rely heavily on all three, none of them ask for anything (the snippets below had to be dragged from them as they shun recognition) and we owe each of them our sincere and heartfelt gratitude for the fantastic job they do that allows us to operate as a professional and respected organisation on a shoestring budget.
They are true heroes who are totally deserving of the utmost respect and admiration. Isaac, Ryan and Jay… Thank You!
Volunteering my time, knowledge and skills has been something I’ve found so very rewarding. I’ve been working with the HSP Research Foundation for sometime and I had to look up how long it’s been, I was surprised I’ve been along the HSP Research journey for over 10 years.
My primary focus is managing the online infrastructure to ensure the website and email is humming along. There have been three major versions of the website to cater for the needs of the day. The latest update was to optimise the website for mobile devices, majority of our users now visit our site from a phone or tablet.
Given the hard working small team running the HSP Research Foundation a huge amount of progress has been made in the many hours of research that has been undertaken to find an effective treatment for the Hereditary Spastic Paraplegia disease. This is what has made volunteering for so long worth it, I don’t have any personal connections to HSP in my family or friends.
The HSP Research Foundation website has cemented itself as providing a vast amount of information of this rare disease, over 850 articles been published and counting. Since 2007 we have had 160,000 visitors visit over half a million pages on our site. This outreach has been achieved by the power of the internet at an incredibly low cost which means more money is directed into research.
This is the best way I can give back to a community which is doing amazing things and I look forward to many more years supporting the HSP Research Foundation.
PS. Isaac is also the consultant and architect of our migration to the cloud server platform that houses our filing system with thousands of important documents.
I developed a system to help the Foundation manage and communicate with its wide network of donors, supporters, medical professionals, researchers and counsellors.
The system provides an easy-to-use interface for staff to search and categorising their contacts. I provide ongoing support as the needs of the Foundation grow and change.
I enjoy using my IT skills to help organisations like the HSPRF that have a positive impact on people’s lives by providing custom-built alternatives to complex and expensive proprietary software.
Jay, a qualified accountant, has volunteered to audit the books and prepare the Annual Financial Reports of the Foundation since 2012. Originally from Sri Lanka, Jay and his family moved to Australia from the UK around 2011. One of the first things he did when he got settled in to his new country in Sydney was to contact the Foundation and offer his services in response to an online call for an accountant for the Foundation. At the time, Jay and his family were living in rental accommodation and he did not yet have a job.
During a meeting with Foundation President Frank McKeown to discuss the role, Jay was asked why he was volunteering when he knew nothing about HSP and did not yet have a job. Jay replied that he wanted to give back to the country and the community that had accepted he and his family and he believed in charity volunteering. Jay, a dedicated family man, now lives with his wife and children in their own home in suburban Brisbane where he has full-time employment.
Jay developed the architecture for the accounting and financial reporting systems that the Foundation now uses. These systems have streamlined our bookkeeping and made it significantly easier and more effective.
Jay stood down from his role at the end of 2018 after 6 years of service for the Foundation. The whole HSP community thanks him for his valuable contribution over the years and sends warm best wishes to he and his family for the future.