I’m fundraising in support of my friend, Emmi who is 8 years old and lives with GRIN1, an ultra-rare genetic condition that affects how brain cells communicate. Because of this, everyday things that many of us take for granted - walking, talking, learning, and moving - is very challenging. Despite theses challenges, Emmi is full of courage, determination, and brings so much joy to those who know her. She inspires everone around her every day. This August I will be skipping 100 skips a day with my daughter Ella to help raise awareness of rare diseases like GRIN1 and to fundraise and support much needed research that brings hope for better treatments and brighter futures. Every skip, every donation helps start a conversation, every conversation helps bring understanding. Together, we can make a difference for children like Emmi. .
Here's just one story explaining why this cause is so important:
Harrison was a healthy, active child, until one day out of the blue, “He wasn’t quite right, and then the next day he just stopped walking, and we knew something was very wrong,” said his father, Adam.
Doctors found something wrong with his blood, and when his parents were told it could be leukaemia “everything stopped.” As terrifying as that word was for them to hear, it got worse as Harrison’s case was unique, and it took many DNA tests to determine he had acute myeloid leukaemia (AML). They were lucky to get the right treatment after the right diagnosis, but it could have gone very differently if that work had not been done.
“Medical research is so important to get any answers for any genetic condition,” said his mum, Naomi. “For Harrison, the research done prior to him getting sick is what helped save our son. Research needs to continue so the next child diagnosed with a rare form of AML or any cancer—it can help them.”
I care about the 1 in 20 Aussie kids who face a birth defect or genetic disease, like cancer. Most people don’t know that cancer is caused by changes in genes—but almost everyone will be touched by it. So, the research you and I support today may one day help someone we know, someone in our family.
There’s lots of work to do, but there is also lots of hope.
Join me. Share this message. Donate. Thank You!
Raised so far
With your help, I have raised...
$3,152
You’re helping fund research to find cures for kids with genetic diseases. Every dollar counts!
Biggest Donor
Kate Bingemann and family
$150
Thank you so much to my biggest supporter, Kate Bingemann and family, for donating an incredible $150 to help fund vital research into curing children’s genetic diseases.
My Impact
So far this year, I've helped fund...
63
Hours of research
Every $50 raised funds an hour of vital research.
Thank you to our donors
$61
Saoirle
Incredible effort for an incredible little girl 👏
$107
Bec Bergen
A worthy cause so incredibly close to our hearts. Thank you Brigh and Ella, we're so lucky to have such beautiful friends - happy skipping! Love Joel, Bec, Emmi and Mitch
$107
Fiona Schulze
Good luck Brighid and Ella! Love to support you and our little Emmi ❤️
$56
Mat Seal
$40
Alex Soutar
$150
Kate Bingemann And Family
Great effort Brigh and Ella, for such an important cause xx
$107
Kate Molinari
💕💕💕
$61
Vera Riley
Great cause!
$24
Anonymous
$55
Reece Family
Cheering you on Brigh and Ella! Amazing effort for a great cause. Go smash it! ⭐
$40
Kate
$39
Bakowski Fam
WHOO HOO!!
$5
Christie Delauney
$117
The Cunninghams
Hi 5’s to you Brigh and Ella, and all our love to our little Emmi gal, absolute sunshine ☀️
$29
Haylee Green
$61
Robin Cordin
Very happy to donate. Well done Bridgh!!!
$117
Caz Barham
Go Brigh and Ella! Such a great way to support beautiful Emmi xx
$45
Pia Ryan
Well done Ella and Brigh, such a wonderfull cause. Xx
$60
Amanda Peterkin
What an important cause. Great work team!
$107
Lisa Colbert
Amazing Brigh & Ella ❤️
$107
Lettie Ennis
🩷💜🩷💜
$61
Arabella Casey-sinclair
$117
The Ackermann Family
Go Ella and Brigh!
$29
India Beards
Hope this helps! Such an amazing cause! xx
$61
Anonymous
$117
Dom Bourke
Keep up the skipping Brigh and Ella!
$117
Jenny Bourke
$117
Groom Family
You guys are the best!! What a great cause 💕
$107
Sam & Georgia Cousens
Great work Bridgh and Ella ❤️
$40
Anonymous
$56
Anonymous
$107
Susannah Wallman
Go Brigh and Ella! 👏👏👏
$117
Tiana Blakeman
$107
Katie Lamb
Thank you for doing this!
$100
Stephanie Lamb
Thank you Brigh and Ella 🙏
$107
Kerri
A great effort for such a worthy cause Brigh and Ella ❤️
$61
Elizabeth Whitehand
Well done for supporting your friend and such a great cause Brighi .💕
$117
Matched Donation
$117
"Incredible effort for an incredible little girl 👏"