Hope for Oscar - Running for a Cure for CTD
22.805,68 €
Raised
719
Donations
16.868 €
Goal
UPDATE: Thanks to all our amazing sponsors we have already reached our goal of €16.868! We are feeling so grateful and overwhelmed by all your support! All raised funds will be donated in the hopes of finding a cure for CTD, so no reason to stop here. Together we can do this!
What is CTD
Creatine isn’t just for athletes in the gym. It’s essential for brain function, movement, and learning. Without it, the brain struggles to grow and work properly.
Creatine transporter deficiency (CTD) is part of a group of rare genetic disorders called Cerebral Creatine Deficiency Syndromes (CCDS). These conditions disrupt how the body produces or transports creatine. It can cause developmental delays, speech difficulties, movement disorders and seizures.
For children with CTD, like our son Oscar, there are currently no treatment options.
The creatine is there-but without transporters, it can’t reach the brain. It’s like an electric car with an empty battery, sitting next to a charging station, but without a cable to connect the two. So more research is needed!
Who is Oscar
Oscar is our 3-year old son. He is the happiest and most cheerful boy, but unfortunately he faces daily challenges due to CTD. It impacts his speech, cognitive abilities and motor function. However, he amazes us every day with his determination and joy.
As his parents, we can only imagine what life would be if he did not suffer from CTD, and our biggest wish is that there will be a cure one day. In order to achieve that, we need your help!
Running 68 kilometers for a cure
Yes, we could have just asked you to donate (and you may have, because if you made it all the way here reading this, you're pretty amazing). But since Oscar puts in so much effort to develop and grow every day, we felt like we should do something. Something crazy, but for which you need only a fraction of the stamina Oscar has. Therefore, Maaike (Oscar's mom) will be running 68 kilometers on Sunday the 8th of June. The start/finish of the run will be near Strandbar Goeiedag at the Kuilen in Langenboom (beach bar at a recreational lake). The run will consist of 10 loops of 6.8 kilometers through the forest next to the lake. The route will be marked and is unpaved. Please note it is not a race: ther is no time registration and no aid station (water will be provided). Maaike will start the first loop at 8.06AM and is expected to finish around 5PM. Everyone is invited to join Maaike for 1 or more loops, or to come and cheer!
Fundraising for ACD
The Association for Creatine Deficiencies (ACD) is an international nonprofit organization dedicated to cerebral creatine deficiencies (CTD, GAMT and AGAT) and fighting for a cure for these diseases. We are fundraising to support ACD in making their vision reality: newborn screening for all creatine deficiencies and a cure for CTD. All donations will be transfered to ACD. For more information visit their website .
Our donors
A
Amanda
B
Bas
donated
€10
Kleine bijdrage voor een heel goed initiatief!
OF
Oscar Flynn
donated
€50
Hi Oscar! My name is Oscar too - I live in London! I am two years old, so I really admire how old you are (i.e., three). My mama and dada are great pals with Sean and Lena, and we've always heard such wonderful things about you from your aunt and uncle (who we love!). Good luck and let's split some animal biscuits some day. Oscar Flynn (2 years and 7 months)
S
Saskia
donated
€50
Lieve, dappere Maaike, wat een gave uitdaging! Go for it ❤️
R
Rebecca
Lots of love, Becky, Steven and Bear xxx
M
Michelle
RG
Richard Greenane
donated
€100
Debbie, Richard, William and Luke ♥️
S
Stephen
donated
€50
E
Anonymous
donated
€50
E
ERINA
donated
€50
Hope they find the cure soon!
C
Claire
donated
€50
SP
Susan & David Potter
donated
€50
BS
Becky Singleton
donated
€20
GM
Gavin Mc cormack
donated
€200
Helen,Brian,Gav,Glen ❤️
NL
Niamh Leavey
donated
€20
JF
Jennifer Farrelly Clarke
donated
€20
A
Anne
donated
€68
Trots op jullie alledrie! Liefs!
C
Carina
donated
€30
C
Carmel
Lots of love Grandad and Nanny xxx
P
Peter
donated
€30
EV
Ed van den Hoogen
donated
€68
FB
Familie Brulboom
donated
€68
Go go Maaike 💪🏽
NE
Nienke Eiting
donated
€10
D
Downey
donated
€50
BP
Bryan Patten
donated
€68
Fair play Maaike, wishing you the best for the run from Dublin
L
Lisanne en Vincent m
J
Joris
donated
€20
D
David Catherine and Isabella
donated
€100
Wishing you all well
D
deRoij
donated
€50
EH
Eoin & Aliina Helsinki
donated
€100