Having a rare disease, especially one that is life threatening, can be very isolating. Since founding we have supported families by putting them in touch with each other; providing contacts with and advice from leading experts in the condition and helping them with different stages of living with myotubular and centronuclear myopathy. As parents with many years of combined experience in managing the condition, we feel we are in a unique position to provide a real empathy, alongside practical advice.

Notes to the above:

Online donation figures include all donations made via this donate page to Myotubular Trust and includes any Gift Aid reclaimed on behalf of eligible organisations.

Offline donations include cash, cheques and any other donations paid directly to the fundraising organisation. This offline donation total is updated periodically by the Tribute Guardian in conjunction with the fundraising organisation.

The "total raised" figure shown above therefore reflects all monies raised from all sources, both online and offline. Thank you for your support of this Tribute Fund.