When Courage Takes Flight at 80

Meet Peter, an ex-army officer, accomplished sailor, and highly specialised software developer who created sophisticated and impressive sailing strategy software that analysed wind patterns, currents, and boat performance to optimise race tactics. At 80, he has just jumped from an airplane. Not for the thrill, but for the estimated 1.5-3.6 million people worldwide living with Myotonic Dystrophy Type 1 (DM1). A recent research suggests the condition is far more common than previously recognized and significantly underdiagnosed.

Every pound raised goes directly to a support charity that helps affected families and funds university research to unlock the secrets of this devastating condition and find treatments that could transform millions of lives.

This cause is personal to us as among those affected are Jon and Chris, twin brothers whose promising careers as Electronics and IT graduates have been significantly impacted by this progressive neuromuscular condition. DM1 affects multiple body systems by weakening muscles, impacting heart function, and causing difficulties with speech, swallowing, mobility, digestion and daily tasks like meal preparation. Jon is scheduled to receive a pacemaker in the next month, while Chris is currently receiving cardiac treatment.

Myotonic Dystrophy primarily affects every muscle function throughout the body including, the heart, breathing, digestive system, vision, neurological system and many other functions. It causes progressive weakness and the characteristic delayed muscle relaxation that gives the condition its name. Despite these significant challenges, Jon and Chris maintain remarkable positivity and hope that research will lead to effective treatments.

Their experience reflects that of many thousands of families facing this awful condition, where loved ones watch as symptoms gradually progress, knowing that research offers the only path forward.

They remain cheerful and positive in the hope that a cure may soon be found. They are a joy to be with.

Sadly, their story echoes thousands of others of ordinary people whose futures have been derailed, families can only watch helplessly as a genetic lottery devastates their loved ones.

With no cure available, research is our only weapon.

The Myotonic Dystrophy Support Group (https://www.myotonicdystrophysupportgroup.org/) offers very necessary advice and support and also fund conferences and research to find answers. But such support requires serious investment and so we really want to exceed our fund raising target to get things moving properly:

• £250,000 funds a 3-year Clinical Research Fellowship

• £140,000 supports a PhD researcher for 4 years

• £100,000 annually funds a Post-Doctoral researcher plus project costs

• £35,000 backs a promising "proof of concept" study

That's where Peter's extraordinary leap comes in. Every pound raised goes directly to the charity to support their vital operations and fund research at UK universities, where dedicated scientists and researchers are working to unlock the secrets of DM1.

1 in 17 people will face a rare disease in their lifetime.

Sadly, pharmaceutical companies must consider profit and market potential to drive their agenda, so it's charitable funding that keeps hope alive for rare diseases.

Will you help make his leap count?