Support Forum Access

We  provide a friendly and considerate ear to parents who need advice or just someone to talk to seven days a week. We have a online network support forum on Facebook where families can be put in contact with those in similar circumstances as themselves, ask us questions or share stories of their children’s prognosis and progress. This is a private Facebook profile that you have to request to join on the link below and send us a  letter of diagnosis via messenger before you can be added.  We also have a Facebook like page but this is for general updates and supporters to follow. We are here to answer all your questions and support you during times of struggle . We also have a team of parent ambassadors witch a huge knowledge base and personal experience  on hand to provide information to you .  Whether it be advice on conditions,  worries of upcoming procedures,  equipment , transition to adult services , guidance on entitlements , education issues , palliative care, social isolation  or just that its a bad day , we are here to help so please join our community because together we are stronger.

Please click on the link below and add us a friend.


Alternatively if you would like to discuss anything confidentially please contact our grants officer April on 01708 750599

My son won a bravery award. I felt so proud. The medal hangs on his bed. Strongbones makes you feel like you matter, that someone out there cares. Hard as it is to write Strongbones was there for me when i wanted to end it all. There on the end of the phone when I just didn’t want to carry on Strongbones gave us a holiday gave us family time. It’s what we needed. Away from the world. That act of kindness will stay with me .

The wonderful party’s filled us with joy and is something that will live long in our hearts. It’s what is so needed. Must be hard work for the Strongbones team . These days are important for memories of joy and laughter and meeting friends in same situ . At events your child is just that a child. No one sees the tubes, the wires , the equipment we carry around. They just see our child. And fill the day with happiness and memories.”

~ Alison Matthews