Get Involved

Take the Initiative!  Help build the Community

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Social Networking – Make contact with other community members

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frank reyerse database

http://freyerse.org/

People often say they would like to find other HSPers who live near them and now there is a way to do that. This wonderful facility, part of the SP Foundation’s website, allows you to get in touch with HSPers nearest you. Finding other members of the HSP community across the road, across town, across your State, Australia and even the world is now possible – and easy! You can make new friends, organise get-togethers and really feel like you are part of something bigger, feel like you are in a community to which you belong.

It is easy to sign up – just go to the website and click on “Add to Data Base” and enter your details.

  • Click on the map and use the arrows to find your part of the world.
  • Click on the + or – symbols to zoom in or out.
  • Click on the markers on the map to view people’s names, then
  • Click on ‘contact‘ to get in touch with them.

Your privacy is assured. You only release whatever information you are comfortable with.

The beauty of this is that it is simultaneously both global and local. The other advantage is that it has nothing to do with any national group, member or not, nothing formal. So any individual who chooses can locate themselves on the map, volunteer whatever contact information they feel comfortable doing and could, for example choose to contact and convene a local group face-to-face or find an HSP friend in Norway.

Other national HSP groups and their members are being encouraged to participate, making this a truly global meeting place.

This was initially started years ago by Frank Reyerse in the US to foster community by helping people locate and contact each other. Frank is now deceased but the SP Foundation in the US has continued his project. This most valuable legacy of his not only lives on, but is growing and expanding every day, thus making it not only possible to get us all connected, but so easily and simply. Frank, we honour and salute you!

Another option

Another way to find people near you, build community and strengthen your support network is as simple as sending us an email saying, “Hey, I’m Jean from Echuca – if there’s anyone within an hour or two who would like to get together, send me an email or phone me”.  We will post your message on the website and people can get in touch with you via the e-mail address and/or a phone number if you so choose. So email in the details and we’ll post it up for all to see.

Have Your Say

It is YOUR community – here’s an invitation to you to make happen what you want to have happen.  For many, the main form of community interaction will be through this website – a hub of two-way communication.  In various places on the site you will find links to send in an email, and there is one place dedicated to what you are saying – the YOUR FEEDBACK section on the home page.  Here you will be able to read what others are saying and have your say too.

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Fundraising

Social gatherings & Community Events

Social gatherings and community events present an opportunity for fundraising.  You don’t need us to tell you of all the ways to do this:

  • Sausage sizzle at a sporting event, market or community gathering
  • Garage sale
  • Cake or biscuit bake
  • Sponsorship for a walk or run, bike ride, horse ride, car rally or golf day
  • Coin box at an event or on the counter of the local pharmacy, petrol station, pizza shop or supermarket
  • Gold coin day at a function, meeting, school or group you belong to
  • Ask people to give to HSP Research, rather than presents at birthday parties, family get-togethers and Christmas. People can give securely online.

Think about it next time you are involved in something.  If you think you might need a receipt book for larger amounts, just email us and we will send you one.

 

Local organisations

Local organisations often do one or more fundraisings for charity each year – service clubs such as Lions and Rotary, RSLs and other clubs – garden clubs, car clubs, sporting clubs, bridge clubs, bowls clubs, and so on.

Sometimes they raise funds for their own organisation but give some of that to a charity.  Other times they are happy to run a special event just for a charity. We can provide support materials to publicise HSP and the funding of research to find an effective treatment.

Contact your local organisations and see if they will help out. Get involved, get your family and relatives involved with local clubs and community groups and make them aware of HSP and the HSP Research Foundation. Put the HSP Research Foundation on the ‘radar’ of your local community group!

 

Company Giving & Employee matching programs

Business organisations appreciate the need to be, and be seen as, good members of their local community.  This may take the form of a working bee to paint the hall or clubhouse of a sporting club, organising a day outing for disadvantaged kids or a company giving program where a percentage of profits are gifted to charity.

Employee matching programs are becoming increasingly popular, where employees initiate fundraising for causes of their choice and the company matches their fundraising on some basis such as dollar-for-dollar. Ask the company you work for about giving or employee-matching programs and let us know!

 

Shop at Ritchies IGA supermarkets or liquor stores

Ritchies will donate 0.5% of the total spent in all their stores across Victoria, New South Wales and Queensland where HSP Research Foundation community benefit cards are presented at the checkout (the total spent across all stores must reach $2,000 in any given month).

Aleacia and Leanne

Aleacia and Leanne

Get your Ritchies IGA community benefit card

  • Ask for your free Community Benefit Card at a Ritchies IGA supermarket or liquor store, quoting HSP Research Foundation, number 93860.
  • Your Ritchies Community Benefit Card will be issued on the spot and can be used immediately!
  • You can choose to have a tag for your key ring or a plastic card. You might prefer one of each. The card or key tags are free and the choice is up to you.
  • Every time you shop, present your key tag or card at the checkout and 0.5% of the total you spend goes to the HSP Research Foundation.
  • Check out your nearest store location. <http://www.ritchies.com.au/stores.html>

 Ask everyone you know to sign up

Tell your relatives, neighbours, friends, work colleagues and others in your community about it and ask them to shop at Ritchies IGA supermarkets and liquor stores to help raise funds for HSP research.

Community members Leanne and daughter Aleacia from Narre Warren in Victoria were the first to get their card and start to raise money for HSP research.

Leanne says, “Now anyone can support HSP research every time they shop at a Ritchies IGA. So, get into your local Ritchies IGA, get your card and start raising funds… and tell your friends!”.

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Shop counter Donation boxes and Flyers

If you own or are involved with retailing, we can send you signage and flyers, and support you in getting a donation box set up on your counter.

There are DL sized flyers that customers can take with them. These carry the message about what HSP is, the importance of research and the need for funds for HSP research. E-mail us with your details to learn more.

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Success stories

  • Natalie ran in Sydney’s City to Surf run to raise funds on behalf of her daughter.  Sponsors she rallied in her community contributed over $17,000 to the team.
  • Jason is a car club enthusiast and a member of the Foundation since inception in 2005.  His car club, the Wollongong Street Machine, holds shows and events to display their much-loved, customised beauties.  From entry fees and sausage sizzles etc., the club gives to charities, including $500 to the HSPRF.
  • Col and Judy approached their garden club.  The club holds an Open Garden weekend and raises funds for worthy causes.  They told the committee about the HSPRF and the club has contributed regularly since.
  • Narelle had a 50th birthday coming up and invited 170 special people in her life.  She asked people to give to the HSPRF instead of presents.  Narelle’s husband Ian wrote the receipts for $2,000.  Narelle urges everyone to do the same when a special occasion arises.  She said “We were overwhelmed by people’s generosity and we are sure you will be too”.

To help you imagine what’s possible… The British Disabled Flying Association towed a 57 tonne Boeing-757 along the airport runway with manual wheelchairs – for fun and funds!

Remember that the Foundation receives no financial support at all from the government.  Without members’ fundraising efforts there would be no Gene Testing Service, there would be no stem cell research towards a cure for HSP. Every cent counts in funding research for a cure.

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Publicity

HSP is a rare, low profile disease, not well known or understood in either the medical community, or amongst the population in general.

The more people are aware, the more funds we raise AND the more medical professionals become aware of HSP, which can only lead to better diagnoses and services.

You can start by spreading the word to family, friends and work colleagues. Many diseases, disabilities and illnesses such as MS, prostate cancer and cerebral palsy do not come to our attention unless we personally know of someone who is affected.  Otherwise we find out about them through the media, eg. Pink Ribbons for Breast Cancer Research.

So think about ways that YOU can help raise the profile of HSP:

  • Do you know of a newsletter or website to which you can contribute an article?
  • Get a story in a newspaper or magazine?
  • Talk to a service or community club about HSP?
  • Get a radio interview?
  • Is there a noticeboard at your local library, community centre, sports club or at your doctor’s, dentist’s surgery or chemist?

Here is a handout that you can download, print off and use to publicise the Foundation and its work.

If you can find the opportunity but want some help with what to write or say, email us and we will help get the right message for the particular opportunity.