Mo Pedal 2 Paris. Team Abigail
Mwangala Lishomwa is raising money for Reverse Rett
Participants: Roberto Ekholm
Story
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My beautiful three-year-old niece Abigail has inspired me, to challenge myself as a complete novice outdoor and long-distance cyclist to pedal from London to Paris on 31st May 2019. My wonderful friend Roberto Ekholm will be joining me.
Abigail is a beautiful kid, with the most infectious laugh. Abigail has Rett Syndrome.
Before January I hadn’t owned or been on a non-stationary bike in over 12 years. My last bike was when I didn’t live in London, and it was a Dutch black and orange striped granny bike with peddle-back brakes. Over the years incidents with canals, tramlines, horizontal ice rain, damaged knees and hamstrings put me off ever wanting to ride again.
Then came Rett to my family. Researching the syndrome, and speaking with the charity and connecting with clinicians researching a cure, I decided to get out of my comfort zone, my acquired fear for riding in traffic and make a significant effort and raise a considerable amount of money to support in the ending of this disorder and provide care girls and their families.
Rett syndrome is a neurological disorder that affects 1 in 10-15,000 mainly girls. Stats show every 90 minutes a girl is born with Rett Syndrome. Her parents won't know she has Rett until she is around 18-24 months when her growth progress will slow, her skills will deteriorate, and symptoms will start — leaving her with life long multiple & severe disabilities ranging from & not limited to communication, motor & anxiety disorders. But there’s hope for a cure as one has been found in the lab. The condition has been reversed in mouse models following identification of the gene mutation. Gene therapy holds the key to reversing the condition.
These girls and women have desires, dreams and emotions - all that makes us human and give us joy. Research shows that they aren’t brain damaged, they are locked in - trapped by a body which can’t obey signals from the brain.
Currently, there is no cure for Rett Syndrome, and no FDA or EMA approved drugs or treatments, but the world's first gene therapy trials were projected to begin in 2018/2019.
Within five years Reverse Rett hope to have a cure, so all the babies, girls and women with Rett Syndrome worldwide could have their lives back.
£1000 funds an overnight stay in Clinical Trial Facility + special nurse
£100 could buy enough urine collection kits for 5 patients for the duration of the trial
£20 could buy numbing cream to help patients in the trial.
And that is where I need your help....your donation will fund the vital research needed to Reverse Rett. Anything you can give will be much appreciated.
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.
My beautiful three-year-old niece Abigail has inspired me, to challenge myself as a complete novice outdoor and long-distance cyclist to pedal from London to Paris on 31st May 2019. My wonderful friend Roberto Ekholm will be joining me.
Abigail is a beautiful kid, with the most infectious laugh. Abigail has Rett Syndrome.
Before January I hadn’t owned or been on a non-stationary bike in over 12 years. My last bike was when I didn’t live in London, and it was a Dutch black and orange striped granny bike with peddle-back brakes. Over the years incidents with canals, tramlines, horizontal ice rain, damaged knees and hamstrings put me off ever wanting to ride again.
Then came Rett to my family. Researching the syndrome, and speaking with the charity and connecting with clinicians researching a cure, I decided to get out of my comfort zone, my acquired fear for riding in traffic and make a significant effort and raise a considerable amount of money to support in the ending of this disorder and provide care girls and their families.
Rett syndrome is a neurological disorder that affects 1 in 10-15,000 mainly girls. Stats show every 90 minutes a girl is born with Rett Syndrome. Her parents won't know she has Rett until she is around 18-24 months when her growth progress will slow, her skills will deteriorate, and symptoms will start — leaving her with life long multiple & severe disabilities ranging from & not limited to communication, motor & anxiety disorders. But there’s hope for a cure as one has been found in the lab. The condition has been reversed in mouse models following identification of the gene mutation. Gene therapy holds the key to reversing the condition.
These girls and women have desires, dreams and emotions - all that makes us human and give us joy. Research shows that they aren’t brain damaged, they are locked in - trapped by a body which can’t obey signals from the brain.
Currently, there is no cure for Rett Syndrome, and no FDA or EMA approved drugs or treatments, but the world's first gene therapy trials were projected to begin in 2018/2019.
Within five years Reverse Rett hope to have a cure, so all the babies, girls and women with Rett Syndrome worldwide could have their lives back.
£1000 funds an overnight stay in Clinical Trial Facility + special nurse
£100 could buy enough urine collection kits for 5 patients for the duration of the trial
£20 could buy numbing cream to help patients in the trial.
And that is where I need your help....your donation will fund the vital research needed to Reverse Rett. Anything you can give will be much appreciated.
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.