Send this page to a friend

Here is a place you can spend time if you feel like doing something about HD.

Some people don’t have time or the emotional space to do anything other than concentrate on their own family which is totally cool, HD is a big deal and often overwhelming.

Some people want to do something about HD as it makes them feel better that way. If you are that kind of person or in that head space at the moment, we thought we would put some ideas down to help you get started.

There are some easy ways you can do something about HD and make a really big difference.

  You can raise awareness of HD. As you know, hardly any people know about HD. It is really important that more people find out about HD, it makes it easier for everyone who has HD in their family.  
  You can raise money and donate it to an organization that is researching to find a cure for HD or an association or agency that supports families with HD.
  You can send a message to a politician (who are responsible for all the money) to let them know about the problems you face and ask them to help fix them.
  Take part in research.
Some suggestions on how to raise awareness

Telling your story is a great place to start. Not many people have heard of HD so they will like learning some facts about HD and really like hearing your story too. If you don’t want to tell your story, put some facts together about HD and tell those.

HD can be confusing and you are not a scientist. Don't worry about the complicated stuff - tell people some facts but focus on YOU or someone YOU know. Tell people how it feels.

You can get some facts about HD from the web. Start with taking stuff from this site. Other great websites to visit are the HD Associations around the world. Look at our links page for good places to visit.

Some suggestions on where you could tell your story:

  • You can talk to your school class or assembly.
  • You can contact groups like Rotary, Lions Club and church groups who often have guest speakers.
  • You can talk to your local newspaper who like telling stories about people in their area.
  • Start or write in a blog, discussion board or forum online.
  • Start a facebook/myspace page. 
  • Get twittering.
Good luck and tell us how you go!

Some suggestions on how to raise money

The first thing to remember is everything helps. It may seem like a cure will cost a fortune but it all starts with people. President Obama raised millions and millions of dollars for his presidential campaign but his average donation was only $50. From little things, big things grow!

First you need to come up with an idea of how you are going to raise your funds. Here are a few suggestions...and check out the links below!

Just for school:

Donate a gold coin and wear casual clothes or have a dress up day, or have a stall or event at your school fete.

Hold an event:

Ask people to donate to come. Put on a party, a trivia night, hold a fun run or walk, put on a concert or a play.

Sell something:

Create and sell a cookbook, sell chocolates, hold a garage sale, sell something you don’t want on ebay.

Once you have raised your money, you will need to donate it to a worthy organization. Some suggestions of places we know are listed below.

Good places to donate to research to find a cure:

     

Good places to donate to associations who are caring for families with HD:

The HD associations in all states are worthwhile donating to (see our links page).

Once you have finished, make sure you post what you did in the expressions section so we can share your good idea around!

 

Here are some fundrasing events for HD that other young people have held!

A Day In The Vines: Benifit Concert for HD

Australia

Organized by Michelle, Naomi...and all their family and friends!

www.adayinthevines.com

Hoopathon!

USA

BJ started this when he was about 10 years old with his family

www.hoopathon.com Check out the Hoopathon pictures at

Huntingtons Youth Association Facebook page

Leg Wax Fundraiser!

All proceeds in aid of Huntingtons Disease Association Northern Ireland!
This nite will be great craic...about 10-15 men getting waxed...CANNOT BE MISSED!! starts at 8pm, then a DJ at 10pm...followed by food..yum!! Please come an support this cause!! RAFFLE---great prizes to be won!!

Huntingtons Disease Youth Association Facebook page

Roller Blading across America!

Huntingtons Youth Association Facebook page

Running for a Cure...marathons!

Matty Ellis (22 years) has run 4 marathons in 2009 as a tribute to 4 JHD sufferers, having not done any running previously.

Huntingtons Youth Association Facebook page

HD Walks

Huntingtons Youth Association Facebook page

 

 

Some suggestions on how to contact a politician

Writing to a politician is good when you have a particular problem that you want answered. It is also a great way to raise awareness of HD to the really powerful people in the country.

There are different kinds of government in Australia - state and federal.

  • The State Government is responsible for all health in your state like hospitals and doctors.
  • The Federal Government is responsible for aged care which includes things like nursing homes.

Australia votes every few years in different elections to vote someone who lives in your area into both state and federal government. These people are known as your local members and they are the people who represent you to each government. They are voted in by you or your parents and so want to listen to you as if you are not happy, you may vote for someone else next time!

If you have an issue that is bugging you (Why can’t we find a nursing home? Why is there not enough money for a cure? Why can’t we get more financial support? Why can’t I get life insurance?) then write a letter to your local member. Tell them your problem. Demand their help! You can find them by googling your suburb and 'local state government member'

You could also write to the federal and state politician who is in charge of HD related issues. Most of the time this will be the Minister for Health. Find the Minister for Health in your state government by googling. The Federal Minister for Health is Nicola Roxon. Her email is This e-mail address is being protected from spambots. You need JavaScript enabled to view it . The Federal Minister for Mental Health and Ageing is Mark Butler. His email is This e-mail address is being protected from spambots. You need JavaScript enabled to view it

Write about your issues, ask for their help!

Last but not least, write a letter to the Prime Minister Julia Gillard, tell her your story and problem, ask for her help! You never know what may happen.

You can email her: www.pm.gov.au/contact-your-pm

 

Remember, never take no for an answer and tell us how you go!

 

 

Some suggestions on taking part in research

Research is really really important to everyone affected by HD. No one knows yet how to cure HD, but there are many people, all over the world, working to learn more so that they can find a treatment or a cure.

Sometimes scientists and researchers need help from people with symptoms of HD, pre-symptomatic people and/or family members. They need people to take part in studies to test their ideas and learn more real information.

This can mean being a part of a social kind of study, where you may answer some questions about your HD experience. It can also mean a more scientific kind of study, where you may do things like testing your reflexes, or have a scan of your brain or any number of things. All these studies help to build a better picture of the HD story.

Research is not for everyone, often researchers will have quite specific needs for their project. Most often, people have to be over 18. Being a part of a research study can be easy and researchers are very supportive and caring, but it also can be very confronting and bring up all sorts of thoughts and reactions you may not expect so have a good think before you jump in and ask any questions you need before starting.

If you do decide to help though, you are doing a wonderful service as the more research gets done, the quicker we all find the answers we need.

We will list research studies you maybe interested in below as they come up: 

www.predict-hd.net

www.huntington-study-group.org


 
Ask your HD questions, have them answered by an expert Stuff youth alliance's are doing here and around the world If you would like to raise awareness or fundraise click here to find out ideas!