Update: WFS was a great experience for Bonnie & Andrea- although a little quiet on a cold, wet, wintery Melbourne day.
The kms were conquered by us both! (Bon did half of hers on the tennis court before being washed out.)
Huge thanks to those who have supported Bonnie in this- with encouragement and with donations.
On WFS day, a documentary 'Life of Lucas' was released on YouTube.
https://www.youtube.com/watch?v=_3vp5aryJSI&t=2214s
We'd love to encourage you to check it out. Our family relates very strongly with the experience of the Allan fammily. (Except Bon waited 17 long years for diagnosis.)
Bonnie & Andrea xx
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July 25 is global Walk For Strength Day- a day for families around the world to step out to raise awareness about Creatine Deficiency Disease and raise funding to make early diagnosis, effective treatment and a cure a reality. .
We would love you to support us in all of these goals.
Andrea is walking 6.8km today while Bonnie is aiming for 6800 steps and/or 6.8km on the tennis court.
(CTD is caused by a mutation on the gene SLC6A8- thus the 6.8 goal. There are way more adventurous supporters walking or running 68km or even 68 miles!!)
Why does this matter to our family?
Every day, Bonnie lives with Creatine Transporter Deficiency (CTD), an ultra-rare genetic condition that affects her energy, learning, and movement. Diagnosed in 2023, she finally had answers—but there is still no effective treatment and no cure.
Despite the challenges, Bonnie is helping change the future for those with CTD. She takes part in research through blood tests, biopsies, brain imaging, assessments, and supplement trials, helping researchers better understand the condition and work towards effective treatment.
There is real hope. In July 2026, following its 2026 Symposium, ACD announced a venture philanthropy partnership with Ultragenyx, investing $4 million into the clinical development of UX068, a promising investigational therapy for CTD. After travelling across the world to meet other children and young people with CTD in June 2026, Bonnie and her family are proud to support the Race For A Cure.
Every donation brings us closer to earlier diagnosis, better support, effective treatments, and ultimately, a cure.
Thank you for supporting Bonnie and other children living with CTD.
Donations made through ACD Australia are forwarded directly to the ACD Race For A Cure, are processed in Australian dollars, and are tax deductible in Australia.
https://creatineinfo.org/wp-content/uploads/2026/07/Ultragenyx_ACD-partnerships-2026.docx.pdf
