Issue 96, March 2007
Prince Memorial Charitable Trust
Those who read the front-page item of the June 2006 newsletter will be familiar with Carly Fryer's efforts to raise awareness of HD and funds for her local support group. From that, another venture has arisen; a new Trust that will eventually help HD families throughout New Zealand.
After completing her first triathlon Carly decided to aim for the ultimate in triathlon events - the New Zealand Ironman. To balance the equation on the HD side, a similarly momentous task must be undertaken.
A charitable Trust was proposed and initially named the "Huntington's Disease Family Support Trust". Concern was raised that a New Zealand-wide Trust could be seen as a national body and affect funding for the associations and smaller support groups. So the Trust must be renamed with something relevant that did not specifically mention HD.
It was suggested that the Trust be named "Prince Memorial" in memory of the grandmother, mother and uncle of Geoff Pickering (Carly's "Dad") who all died from HD, and without whom none of this would be happening. Their surname was Prince.
As the initials of "Prince Memorial Trust" are PMT and not really the image we wish to present, the word "Charitable" was included to clearly state the purpose of the Trust, and complete the name "Prince Memorial Charitable Trust" (PMCT). To make the purpose of the Trust clear, the logo carries a line that states, "Helping families with Huntington's in New Zealand".
To match Carly's lofty goal the fundraising target was set at one million dollars. Once this has been reached, the board of trustees will accept applications for grants from individuals and families in New Zealand who are affected by HD.
Raising awareness of HD in New Zealand is also an important part of our activities. When Geoff was growing up he knew that his Mum had a "neurological problem" but no one in his family would talk about it, even after her death. So it was a mighty shock to discover that his "nervous" problem was HD and that his uncle and grandmother had also suffered. In those days there was a terrible stigma attached to Huntington's and there is still today, although not as severe. We hope that with more awareness in the general community, HD sufferers and their families can feel a little more comfortable with the problem and open to help where it is offered.
The goals of the Trust will be decided and refined at the first official meeting of the trustees once the Trust has been registered
Help to be Offered
Once funding is available in a few years time, applications will be accepted from HD sufferers and their families, with support from a professional such as a GP or Social Worker.
The aim is to provide help where no other agency is able or willing. The point is to enhance the quality of life for New Zealand residents affected by HD. For example a comfortable chair, help with a special holiday, help with a family event such as a wedding or special birthday, home alteration or maintenance. Applications will be accepted for anything and will be considered on their merit by the trustees each year.
Part of the available funding will possibly be set aside each year to help with an HD-related research project.
Fundraising and Publicity
- Carly's Ironman Challenge: we are accepting pledges from individuals and businesses, payable when Carly completes the New Zealand Ironman in Taupo on March 3rd, 2007.
- Hunt 4 Huntington's: 14 March 2007 - a new venture in association with More FM and the Amazing Maze 'N Maize. A treasure hunt through the maze, aimed at families. This event will also help raise the awareness of HD in our local community and, if the first one goes well, we hope to make it an annual event.
- Apply to Ironman: This year is the last that Ironman New Zealand will promote Cystic Fibrosis as their official charity. We have sent an application for the Prince Memorial Charitable Trust to hold that position for the next three years. This will hopefully be a major source of funding for the Trust and will raise awareness, not only in New Zealand, but also throughout the world. This year for the first time, the majority of the 1100 entrants are from New Zealand; just under 60%.
- NZ Relay: ideas are currently being discussed about Carly's suggestion of a very special relay. More details will be forthcoming in a future newsletter once the idea has been formalised.
- Triathlons: as Carly and I are both heavily involved in the local Multisports Club (Carly takes part, I do data entry) we will discuss the possibility of an event or series of events to benefit the Trust.
There are many other ideas that have been suggested and we are always open to more. If you have a good fundraising idea that you think we could use, please make contact.
Who is involved?
Carly Fryer began it all with her first successful triathlon. The Trust and type of help we wish to offer was my idea (Jan Pickering). Carly and I discussed it with our local support group who thought it was a good idea. We then approached Dorothy Tortell, QSM to be the third trustee and, to our delight, she graciously agreed.
To make up the seven trustees that we will start with, we also have two members of our local group who are very strong supporters and definitely have a heart for Huntington's (which seems to have become our motto), and two others who are not connected with HD other than that they know people in the group. They will bring an enthusiasm and an objective outsiders' view to make the board of trustees a fully rounded team.
The full Trust deed will be publicly available once the formalities have been completed. Geoff, Carly and I are so very grateful for the friendship and support that we have found with HD people in Hawke's Bay and are truly delighted that we can give something back and hopefully benefit the New Zealand HD community as a whole.