Fundraising in 2021

On the way to a record year

The fundraising gauge total stands at $100,958 as at 26 August, an exceptional achievement by so many and well on the way to a record year.

The June fundraising campaign brought in a total of $57,305, half of which came from community giving, with the other half generously matched dollar-for-dollar by four long-term community members.

Over $39,000 has also come in through birthday fundraisers and other events, where people engaged their social media networks to get behind them and help raise funds for HSP research.

Birthday Fundraisers

Several community members have been active this year celebrating their birthdays as fundraisers for HSP research using Facebook, GoFundraise and CrowdRaiser.

James’ birthday

13 birthday fundraisers were done on Facebook. James from Queensland celebrated his 70th birthday milestone and was extremely happy with the response he received, passing on a big thank you to his supporters. Other birthday fundraisers were run by Mickey, Nikki, Debbie (WA), Sharon (NSW), Suzie (ACT), Deeon (Qld), Bec ‘n Dan, Andrew (SA), Halina and Rhonda, Danielle (Qld) and Narelle (Qld).

Helen (that’s some cake!)

Outside of the Facebook fundraisers, Helen from Queensland, whose husband Ken has HSP, invited 30 guests to her milestone 60th birthday celebration with a request to donate to HSP research in lieu of presents. Helen was impressed with the response received and both expressed their sincere thanks for the generous support.

Arlo’s birthday fundraiser


An idea to do a small fundraiser for HSP research turned into a community-wide all-day party for the whole town in Lakes Entrance, a rural community in Victoria, and raised an incredible $24,692.

It began with a simple goal – to raise awareness of their son Arlo’s HSP in a small community where locals see and interact with their son on a daily basis, either in their family run cafe or when out and about, shopping etc.

Arlo, Erik & Mal

Parents Erik and Mal decided to raise some funds while celebrating their son Arlo’s (aka George) birthday. The original idea was to donate coffee sales from the day only, but customers and locals began donating items and cash so fast it turned into a raffle and online auction. Erik commented, “Thousands of dollars of prizes were donated, and we sold 2000 raffle tickets! Some of our regular customers bought a coffee but insisted it be a “$100″ coffee … people were very generous!”

The fundraising turned into an all-day affair on Saturday 22 May, Arlo’s 4th birthday with the proceeds going to the HSP Research Foundation. On the day ALL coffee/drink sales are going directly to the Foundation, plus there was a MEGA RAFFLE draw, with generously donated prizes from so many wonderful local businesses and individuals in the community.

The party!

There was also an online auction with MORE generously donated items.

Raffle tickets were on sale in the café and at multiple locations around town.

Other fundraisers

‘Stadium Stomp’ 2021 Adelaide Oval

Kylie from South Australia set up a page on GoFundraise and received $600 in sponsorships for doing the ‘Stadium Stomp 2021’ at the Adelaide Oval.

One of Kylie’s clients has a son with HSP for whom she fundraised in 2019 as well.

Annabel (VIC) set up a fundraising page using the CrowdRaiser platform on long time Foundation partner GiveNow’s website, with $1,300 raised so far.

Another Facebook fundraiser was done by Jen (VIC) raising funds from family and friends supporting her daughter with HSP.

Our warmest appreciation and heartfelt thanks

The Foundation is truly, greatly appreciative of the time and effort each and everyone here put in to raise funding for HSP research through their initiative. On behalf of everyone in the HSP community and the Foundation, please accept our warmest appreciation and heartfelt thanks for your generous actions. Please also accept a belated birthday wish from us and pass on the Foundation’s appreciation to your friends and loved ones for their vital support.

Foundation President, Frank McKeown, said “This really means a lot. It is not just time and effort and money raised, it is a collective vote of confidence, faith and trust in what the Foundation is doing, both from those who spearheaded these efforts and from those who supported them. It is truly humbling, encouraging and motivating for us to keep moving forward”.


  1. Our donors are the lifeblood of the community. Thank you so much to everyone who has spared some time, resources or money to help in finding a cure. You guys are awesome!

  2. I was in my late forties when I first showed signs of this disease, I began to feel sorry for myself until I saw a child with HSP. That child didn’t feel sorry for himself, he just got on with his life, it was a wake up call for me. That’s when I realised how important it was to find a cure for this horrible debilitating disease, not for us oldies but for the kids!

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