Climb & Cycle for Aaron

03/08/2025

UPDATE GIVINOSTAT

PLEASE SIGN AND SHARE

https://www.change.org/TimeIsMuscleIreland

As you all know we are trying to get a treatment called Givinostat approved in Ireland which has recently been approved in Europe for Duchenne. It is not a cure but slows down the progression by stopping the inflammation in the muscles. While things have started off very positive for the Duchenne Community this week as in the Application from the Pharmaceutical Company has been accepted and gone for Rapid Review which will take up to 30 days. It then will move to Health Technology Assessment (HTA) for some time. We want this process to go through as quickly as possible and need your help.TIME IS MUSCLE and unfortunately Aaron and all our boys cant wait months. If you could sign and share this petition to help try and get this treatment for all our boys as soon as possible we would be so grateful.

Lastly we just want to thank everyone so much for all your support since Duchenne changed our lives forever. The love and kindness and support in the community has been unbelievable and we are so ever grateful for each and every one of you ❤

TIME IS MUSCLE - Keep Our Boys Stronger for Longer

14/06/2025

Ceisteanna ar Pholasaí nó ar Reachtaíocht - Questions on Policy or LegislationTranscript: https://www.oireachtas.ie/en/debates/debate/dail/2025-06-12/31/ ...

12/06/2025

Just a wee update from yesterday. We went to Leinster House for the briefing on trying to get early access to Givinostat for our boys. The briefing was very positive and emotional but all TDs are very supportive in trying to get this medicine to our boys. It was brought up to the Minister for Health's attention in the Dail today and she replied positively and said we are awaiting the pharmaceutical company to make an application to the HSE.

Thanks to our local TD's Charles Ward and Pat the Cope Gallagher who took us into Leinster House to the briefing and looked after us throughout the day. Also thanks to Cllr Jimmy Brogan who was there to support us in the fight for Givinostat.

We would ask if you could all keep supporting this campaign for Aaron and all our boys in the Duchenne community.

TIME IS MUSCLE

08/06/2025

We have been waiting on this a while but we are so delighted that Europe has now approved Givinostat. This is not a cure but slows down the progression. We know it has a bit to go to get it but we do not have time. TIME IS MUSCLE for Aaron and all boys with DMD. We need early access to this drug as quickly as possible. There is a meeting organised at Leinster House this Wednesday 11th June to make Government aware of this and push the process on Please share 🙏

Now approved in the EU, Duvyzat offers an important treatment option for delaying Duchenne muscular dystrophy (DMD) disease progressionDuvyzat is an orally...

02/12/2024

Saturday we were so happy to make a donation from Climb and Cycle for Aaron to Liquid Therapy. We are so lucky to have this amazing facility on our doorstep Liquid Therapy when you see first hand the freedom it gives our children with additional needs. We are so grateful for all the people that make it happen.

07/09/2024

⭐️❤️ 𝗧𝗛𝗔𝗡𝗞 𝗬𝗢𝗨 𝗔𝗟𝗟 ❤️⭐️

We are incredibly grateful for the outpouring of support from our amazing community, both near and far! Thanks to your generosity, we have raised a staggering €47,333 from the climb and cycle, which will go towards Aaron's future care ❤️

A heartfelt thank you to everyone who contributed in any way to make these events a success, and to all who donated and shared kind words throughout this journey. Your support means the world to us!

Pictured: some of our dedicated cyclists, family members, Sinead, Dermot, Patrick, and of course, the main man himself, Aaron 💙

⭐️ 𝗪𝗲 𝘄𝗶𝗹𝗹 𝗯𝗲 𝗿𝗲𝗻𝗮𝗺𝗶𝗻𝗴 𝘁𝗵𝗲 𝗙𝗮𝗰𝗲𝗯𝗼𝗼𝗸 𝗽𝗮𝗴𝗲 𝘀𝗼𝗼𝗻, 𝘀𝗼 𝘀𝘁𝗮𝘆 𝘁𝘂𝗻𝗲𝗱 𝗳𝗼𝗿 𝘂𝗽𝗱𝗮𝘁𝗲𝘀 𝗼𝗻 𝗔𝗮𝗿𝗼𝗻'𝘀 𝗷𝗼𝘂𝗿𝗻𝗲𝘆 𝘄𝗶𝘁𝗵 𝗗𝘂𝗰𝗵𝗲𝗻𝗻𝗲 𝗮𝘀 𝘄𝗲 𝗻𝗮𝘃𝗶𝗴𝗮𝘁𝗲 𝗲𝗮𝗰𝗵 𝗱𝗮𝘆 𝘁𝗼𝗴𝗲𝘁𝗵𝗲𝗿.

𝕄𝕖𝕤𝕤𝕒𝕘𝕖 𝕗𝕣𝕠𝕞 𝔸𝕒𝕣𝕠𝕟𝕤 𝕄𝕦𝕞 𝕊𝕚𝕟𝕖𝕒𝕕 ❤️

"On this World Duchenne Awareness Day thank you all so much again for your donations and support for the Climb and Cyle. We are overwhelmed by the response . Please be assured that whatever Aaron's needs are that you played a big part in him getting the very best care and we will never forget how much the community mean to us and what it did for us. Aaron has taught us so much already what life is all about and how to appreciate the little things and I have learned that there is nothing more important than community and support. Not every day is good but there certainly is good in every day. You just have to see it. Don't stress the small stuff in life. It really doesn't matter. Much love always xx "

07/09/2024

On 7 September the World Duchenne Organisation will launch a documentary that portrays the lives of people living with Duchenne muscular dystrophy across the globe, it will share their journeys, challenges and successes, and captures the resilience and determination of the Duchenne community. People

03/09/2024

⭐️⭐️𝗔𝗽𝗽𝗿𝗲𝗰𝗶𝗮𝘁𝗶𝗼𝗻 𝗣𝗼𝘀𝘁⭐️⭐️

Thanks so much to everyone at Celbridge GAA CLUB for hosting an over 40s blitz on Saturday 31st August ,They raised a whopping €2000 with all funds going to the Climb & Cycle for Aaron fundraiser.

Aaron's uncle Raymond lives in Celbridge and plays with the local team so when the lads got to organising the blitz and suggested that all funds go to Aaron and his fight with Duchenne it was very much appreciated.

Thank you all so much for your kindness and generosity it means alot 💙

03/09/2024

⭐️⭐️𝗔𝗽𝗽𝗿𝗲𝗰𝗶𝗮𝘁𝗶𝗼𝗻 𝗣𝗼𝘀𝘁⭐️⭐️

Thanks so much to everyone at Gráinne's Hair Salon. For the funds raised for Climb & Cycle for Aaron what an a mazing bunch of women in our community 💙💙

We had such an amazing day. The generosity of people was absolutely unreal when a community came together. Thank you to Siobhan Travers, who kindly baked for all who came into the salon on our blowdry day, everyone left with a sweet treat. Thanks to for kindly coming and making tea and serving the beautiful home bakes. A big thank you to , who made us brunch and kept us going throughout the day..
To who joined us for such a brilliant day, she still has the flare for the hair, and everyone was delighted to welcome her back for the day, you are a gem.
To you go above and beyond in anything that needs help and organising. Trisha donated the 1st prize along side Jules hair and Beauty to our raffle, your heart is always in the right place. From Balloons to endless help you are one in a million- Boss🤪
Thank you to anyone who stopped and called in to say hello or helped in anyway thank you all.
Much love
Grainne ❤️

21/08/2024

Hi everyone Sinead here Aaron's mum. Just a message from Dermot and myself. I really don't know where to start or what to say. Saying thank you a million times over just doesn't and will never feel enough for what our community has done for us. When your child get a diagnosis for a condition that you are told there is no treatment to stop it well I can't tell you what that feels like or what it does to you as a parent physically or mentally or how useless you feel, you are in a very lonely place but what I can tell you is we have never felt so much love and support since Aaron was diagnosed with DMD. We are absolutely speechless with the response to the Climb and Cycle for Aaron. Thank you all so much from the bottom of our hearts. To everyone we know and those who we don't know thank you so much for your donations and for the support you have shown us, and all the awareness that has been raised for Duchenne Muscular Dystrophy. To the people who organised this event, we will always be forever grateful for what you have done for Aaron, for the cyclists, friends and family who climbed errigal very early Saturday morning, To the amazing crowd of friends and family that joined us in laghey on Saturday evening and night at the 7 Arches it was unbelievable to see the love and support we have. To everyone that helped out in any way to make the night a very special one thank you all for being there for us. You have lifted our hearts more than you will ever know. Thank you all again ❤

17/08/2024

⭐️🚴‍♂️ 𝗛𝗼𝗺𝗲 𝘁𝗼 𝗟𝗮𝗴𝗵𝗲𝘆 🚴‍♂️⭐️

They have arrived after the longest day 12hours on the go what an amazing achievement to all the guys involved 🤩🤩🤩

No doubt they will be getting a well deserved pint after that 😆

The night is still young yet we have a great evening & night ahead with plenty of music,food and fun ahead here in Seven Arches Bar Laghy with the Raffle & Auction fundraiser starting at 8pm🎶

⭐️⭐️ EVERYONE WELCOME ⭐️⭐️

Thank you all so much for your kind words & words of encouragement for the guys along the way and most of all for all of your donations throughout the day💙

What a great community we have around us 🤩🤩

17/08/2024

⭐️🚴‍♂️ 𝗛𝗼𝗺𝗲 𝘁𝗼 𝗟𝗮𝗴𝗵𝗲𝘆 🚴‍♂️⭐️

They have arrived after the longest day 12hours on the go what an amazing achievement to all the guys involved 🤩🤩🤩

No doubt they will be getting a well deserved pint after that 😆

The night is still young yet we have a great evening & night ahead with plenty of music,food and fun ahead here in Seven Arches Bar Laghy with the Raffle & Auction fundraiser starting at 8pm🎶

⭐️⭐️ EVERYONE WELCOME ⭐️⭐️

Thank you all so much for your kind words & words of encouragement for the guys along the way and most of all for all of your donations throughout the day💙

What a great community we have around us 🤩🤩