I've told you how Liam was diagnosed. And I've told you what happens after diagnosis. As we are finishing up the month of August, (aka A-T Awareness Month) just 9 days left to go, it seemed only fair to inform you of how you can help make a difference in the lives of A-T kids & their families.
First off there are multiple ways to make a difference. Donating money is the easiest. But it is just one way...not the only way or even the best way. It's totally up to your personal preference. Let me also preface this post by telling you, you do NOT have to be related to or personally know an A-T kid (or A-T family) in order to help.
How Can I Help Fund a Cure for A-T:
1.) Donate (online) to the A-T Children's Project at this link here...
2.) Donate via snail mail...
A-T Children's Project
5300 W Hillsboro Blvd. Ste 105
Coconut Creek, FL
33073 USA
3.) Call 1-800-543-5728 or 954-481-6611
Like I said donating money is one way to help.
4.) Sign up with A-T Children's Project for ideas to create your own fundraiser...Just follow this link their fundraising ideas page.
5.) You can also go to this page to see what fundraising opportunities are taking place in the upcoming future, as well as where they are taking place. Maybe there is one coming soon to your area, that you can attend.
6.) If you are on Facebook, you can also go to the A-T Volunteer Squad Group page for a list of upcoming events to which you can donate your time & energy. You'll be updated regularly with upcoming events & you can sign up & be put into contact with fundraisers that need volunteers, and you might even decide to participate in the fundraiser itself whether it's a marathon, 5K, Golf event etc... whatever floats your own personal boat. There are so many amazing families & friends out there doing wonderfully creative events & you can even see posts of pictures for past events & showing how much fun everyone has when they work together to affect a change for the better.
7.) There are even big huge events taking place at both Disneyland & Disney World every year. Every Labor Day Weekend, Disneyland hosts a half marathon fundraising event for anyone & everyone & you guessed it, a lot of different charities, including the ATCP, have runners signed up to run for them. You'll be assigned an A-T Child/family to run for if you don't have one of your own. This is a big weekend event that takes place w an official ATCP 5K/family fun run on Saturday morning & the 1/2 Marathon on Monday (Labor Day), participants get cheaper entry into the park btw. :) And then again in January, there is a HUGE 5K, 1/2 Marathon, Full Marathon weekend at Disney World. If you successfully run all 3 you win the Goofy Challenge & it's very cool. Again park discounts to runners.
Disneyland Super Heroes Half Marathon in November
Disney World Marathon in January
8.) Join the A-T Cure Team
As you can see by the lengthy list above, there are a plethora of ways you can help fight A-T, and by extension...save the life of A-T Kids everywhere. From donating money, to donating your time volunteering, to creating your own fundraiser, to joining a race anywhere across the country.
9.) You can even shop to help raise funds for A-T. You can do it directly by buying merchandise from the ATCP here. OR you can go to Amazon Smile. From there you can pick a charity (A-T Children's Project aka ATCP) & from then on a portion of everything you purchase from will go towards the ATCP. But you have to shop via Amazon Smile not just Amazon. There is a difference in the address but it is the exact same Amazon site.
10.) There are even A-T Organizations in other countries that you can join should you be reading this post from somewhere other than the USA.
Ataxia Telangiectasia in other countries:
In the United Kingdom: AT Society
In Australia: BrAshA-T
Also in the UK: Action for A-T
In India: A-T Foundation
In Brazil: Projeto AT Brasil
In France: Association Pour la Recherche sur l'A-T
In Germany: AT Info
In Israel: Association for Fighting A-T Disease
In Italy: A True Smile Association
In Japan: Ataxia Telangiectasia Project
In The Netherlands: Twan Foundation
In Poland: Razem Zdazymy (Together we are in time)
In Spain: Association Espanola Familia Ataxia Telangiectasia (aefat)
Remember because Ataxia Telangiectasia is considered a rare disease (Or orphan disease) there aren't any big companies donating huge amounts of money. It isn't one of the big sexy diseases that get a lot of attention because it is rare, there are only about 1000 kids world wide who have the disease. No one cares about our little rare disease. No money to be made from studying it, from big pharma's point of view. All monies raised for a cure come from small grassroots campaigns hosted by families afflicted by, or friends of families afflicted by A-T. But our disease is just as important as all those big sexy diseases. The mortality rate is 100% and all of them far younger than they should be. And honestly, because A-T affects a startling number of different bodily systems, a cure for A-T has significant meaning to several other neurological diseases as well. Such as Parkinson's & Alzheimer's as examples. Two very big sexy diseases in their own right.
If you are looking for a way to help there is nothing better than taking that initial step & enjoying the ride to follow. Because there is nothing more satisfying than volunteering your time, energy, heart, & soul to helping a child live a long healthy life. These kids need us. They need you. They need a cure. And we are the best way to make that happen. All it takes is one step...a click on a link above, a phone call, a sign-up, a day spent in service of children is never a day wasted. And the blessings waiting for those who put others first are immeasurable. For those of you who took the time this last month to read these personal posts about our journey so far in the world of rare disease, I thank you. Humbly & sincerely. Thank you.
Sending all my love to you & yours through the Interwebs tonight.
Liam's Mom -Jess
First off there are multiple ways to make a difference. Donating money is the easiest. But it is just one way...not the only way or even the best way. It's totally up to your personal preference. Let me also preface this post by telling you, you do NOT have to be related to or personally know an A-T kid (or A-T family) in order to help.
How Can I Help Fund a Cure for A-T:
1.) Donate (online) to the A-T Children's Project at this link here...
2.) Donate via snail mail...
A-T Children's Project
5300 W Hillsboro Blvd. Ste 105
Coconut Creek, FL
33073 USA
3.) Call 1-800-543-5728 or 954-481-6611
Like I said donating money is one way to help.
4.) Sign up with A-T Children's Project for ideas to create your own fundraiser...Just follow this link their fundraising ideas page.
5.) You can also go to this page to see what fundraising opportunities are taking place in the upcoming future, as well as where they are taking place. Maybe there is one coming soon to your area, that you can attend.
6.) If you are on Facebook, you can also go to the A-T Volunteer Squad Group page for a list of upcoming events to which you can donate your time & energy. You'll be updated regularly with upcoming events & you can sign up & be put into contact with fundraisers that need volunteers, and you might even decide to participate in the fundraiser itself whether it's a marathon, 5K, Golf event etc... whatever floats your own personal boat. There are so many amazing families & friends out there doing wonderfully creative events & you can even see posts of pictures for past events & showing how much fun everyone has when they work together to affect a change for the better.
7.) There are even big huge events taking place at both Disneyland & Disney World every year. Every Labor Day Weekend, Disneyland hosts a half marathon fundraising event for anyone & everyone & you guessed it, a lot of different charities, including the ATCP, have runners signed up to run for them. You'll be assigned an A-T Child/family to run for if you don't have one of your own. This is a big weekend event that takes place w an official ATCP 5K/family fun run on Saturday morning & the 1/2 Marathon on Monday (Labor Day), participants get cheaper entry into the park btw. :) And then again in January, there is a HUGE 5K, 1/2 Marathon, Full Marathon weekend at Disney World. If you successfully run all 3 you win the Goofy Challenge & it's very cool. Again park discounts to runners.
Disneyland Super Heroes Half Marathon in November
Disney World Marathon in January
8.) Join the A-T Cure Team
As you can see by the lengthy list above, there are a plethora of ways you can help fight A-T, and by extension...save the life of A-T Kids everywhere. From donating money, to donating your time volunteering, to creating your own fundraiser, to joining a race anywhere across the country.
9.) You can even shop to help raise funds for A-T. You can do it directly by buying merchandise from the ATCP here. OR you can go to Amazon Smile. From there you can pick a charity (A-T Children's Project aka ATCP) & from then on a portion of everything you purchase from will go towards the ATCP. But you have to shop via Amazon Smile not just Amazon. There is a difference in the address but it is the exact same Amazon site.
10.) There are even A-T Organizations in other countries that you can join should you be reading this post from somewhere other than the USA.
Ataxia Telangiectasia in other countries:
In the United Kingdom: AT Society
In Australia: BrAshA-T
Also in the UK: Action for A-T
In India: A-T Foundation
In Brazil: Projeto AT Brasil
In France: Association Pour la Recherche sur l'A-T
In Germany: AT Info
In Israel: Association for Fighting A-T Disease
In Italy: A True Smile Association
In Japan: Ataxia Telangiectasia Project
In The Netherlands: Twan Foundation
In Poland: Razem Zdazymy (Together we are in time)
In Spain: Association Espanola Familia Ataxia Telangiectasia (aefat)
Remember because Ataxia Telangiectasia is considered a rare disease (Or orphan disease) there aren't any big companies donating huge amounts of money. It isn't one of the big sexy diseases that get a lot of attention because it is rare, there are only about 1000 kids world wide who have the disease. No one cares about our little rare disease. No money to be made from studying it, from big pharma's point of view. All monies raised for a cure come from small grassroots campaigns hosted by families afflicted by, or friends of families afflicted by A-T. But our disease is just as important as all those big sexy diseases. The mortality rate is 100% and all of them far younger than they should be. And honestly, because A-T affects a startling number of different bodily systems, a cure for A-T has significant meaning to several other neurological diseases as well. Such as Parkinson's & Alzheimer's as examples. Two very big sexy diseases in their own right.
If you are looking for a way to help there is nothing better than taking that initial step & enjoying the ride to follow. Because there is nothing more satisfying than volunteering your time, energy, heart, & soul to helping a child live a long healthy life. These kids need us. They need you. They need a cure. And we are the best way to make that happen. All it takes is one step...a click on a link above, a phone call, a sign-up, a day spent in service of children is never a day wasted. And the blessings waiting for those who put others first are immeasurable. For those of you who took the time this last month to read these personal posts about our journey so far in the world of rare disease, I thank you. Humbly & sincerely. Thank you.
Sending all my love to you & yours through the Interwebs tonight.
Liam's Mom -Jess