Myo the traveling turtle: 2017

During 2017 Myo the traveling turtle continued his adventures. Myo’s mission is to travel the world, visiting members of the centronuclear and myotubular myopathy community, bringing smiles and helping the community stay connected.

In April Myo traveled to Marrakesh, South Africa with Marie Wood – they traveled via London, where they met up with Anne and Mel from the Myotubular Trust.

In June he visited the Garland family in Indiana where he attended a GI appointment and also Pirate day at the school where Reese who has myotubular myopathy attends – he also got to see Reese be awarded a certificate of achievement on his last day at kindergarten.

July saw Myo travel to Tennessee for the MTM-CNM Family Conference, where he got to meet and spend time with many MTM-CNM families, friends, and professionals and on arriving in Nashville got to enjoy some live music at a honky tonk (leaving with a memento – a guitar pick with a turtle on it) and at the Grand Ole Opry too.

In September Myo attend the Global Genes Rare Patient Advocacy Summit in Irvine, California. Highlights included meeting Bruce Bloom, CEO of Cures Within Reach, an organisation who are helping to work toward using a repurposed drug to treat MTM and watching the film ‘We Carry Kevan’ (Myo got to meet Kevan too).

Further information

Where will Myo show up next? If you would like Myo to visit you email info@mtm-cnm.orgTo keep up to date with Myo’s travels and see where he goes next, visit the MTM-CNM Family Connection website or Myo’s Facebook page.

You can learn more about We Carry Kevan and the Global Genes Rare Patient Advocacy Summit below.

You can read more about Myo’s travels below.

 

 

Myo the traveling turtle: 2016

During 2016 Myo the traveling turtle continued his travels around the globe. Myo’s mission is to travel the world, visiting members of the centronuclear and myotubular myopathy community, bringing smiles and helping the CNM/MTM community stay connected.

Myo and Nathan

In 2016 Myo continued his adventures, which included a weekend at Picacho Peak State Park in Arizona with the McDermott family, a hiking trip with the Mashinchi family along the Pacific Coast trail in Oregan and a visit to see Grayson, who was in need of some smiles, at the Children’s Medical Center in Dallas.

Myo and Grayson.

Myo met researchers from the University of Florida, Dr. Barbara Smith and Terry Sexton) learning about the Respiratory Muscle Function Study for XLMTM, in California he met the Serafano Family and in Texas he met with the Swed family.

In May Myo travelled to Germany where he did a little sightseeing before attending the European Family Conference in Frankfurt, held by ZNM Zusammen stark e.V. and the Myotubular Trust. While there he also took a little side trip with Tristen Moors from Audentes to visit Dr Muller-Felber in Munich, at one of the clinical sites working towards gene therapy for MTM and where he also got to meet CNM/MTM community members Marian and her son Jeno who has myotubular myopathy.  

 

The Crane family, Northbrook, Illinois. USA

Myo also met the Crane family in Illinois. Myo would have loved to have met Scott in person but spent some wonderful time with Scott’s family, who told Myo all about him and shared with Myo many of Scott’s favorite things.

Together, Myo and Scott’s family laughed and cried and SMILED (just as Scott would have wanted). Scott loved food, was compassionate, funny, witty, clever, hard working, had an outgoing personality, was a computer wiz, and very much enjoyed talking to all his myotubular and centronuclear myopathy Facebook friends. He had a positive attitude and everyone enjoyed being with him and talking to him – both near and far. Scott’s strong spirit is watching over all of you.
The Crane family. The Crane family. The Crane family.

Global Genes Patient Advocacy Summit

 

Myo, our MTM-CNM Traveling Turtle, also made the trip to the 2016 Global Genes Patient Advocacy Summit in Huntington Beach, California and made his rounds at the summit, meeting patients, family members, researchers, pharma industry and government agency leaders, where he had an opportunity to share with other patient groups how he travels around the world with the goal of connecting our community and spreading awareness of MTM and CNM. Myo was happy to meet some new friends and also did some advocacy work, supporting the #CURESNOW campaign through social media.
 Global Genes Patient Advocacy Summit.
Global Genes Patient Advocacy Summit.  Global Genes Patient Advocacy Summit.

Further information

Where will Myo show up next? To keep up to date with Myo’s travels and see where he goes next, visit the MTM-CNM Family Connection website or Myo’s Facebook page.

* MTM-CNM Family Connection website
* Myo the MTM-CNM traveling turtle on Facebook

If you would like Myo to visit you email info@mtm-cnm.org.

How I Met Your Father

This article first appeared in The Information Point newsletter Our World in 2016 when Aminah Hart told us about her book How I Met Your Father. Aminah, the mother of three children, sons Marlon and Louis who had myotubular myopathy and daughter Leila, then three years old, born after Aminah underwent IVF using anonymous donor sperm. Aminah told the Information Point about her life, her boys and the unconventional way she came to have her daughter and fall in love with Leila’s father Scott. 

Book launch

What made you decide to tell your story

The ABC’s Australian Story did a documentary about my life in 2014. After it aired, three different publishers approached me asking if I’d like to write a memoir and I thought it would be a lovely way to pay tribute to my deceased sons, Marlon and Louis and create a lasting record for my daughter Leila to read when she’s old enough given that she has quite a big back-story to her life and came into the world in quite an unconventional way.

Aminah and Marlon.

Did you have any goals for the book when you began writing it

I was very fortunate to be approached by publishers rather than the other way around. Initially I was offered a ghost writer but I am very protective of the story of my childrens lives and so I very much wanted to tell the story in my own voice and my own way although I’d never written for public consumption before. Ultimately I was offered an advance to write my story and the publisher I chose, Louise Thurtell at Allen and Unwin, was very supportive in her encouragement at the times when I worried I couldn’t do it. She assured me I’d find my voice and once I did the story would flow. This turned out to be true although it took a month of procrastination and avoidance before I got started in earnest.

Aminah and Louis.

How long did the book take to write

I signed the contract with Allen and Unwin in December of 2014 with a manuscript deadline of July 31st. I procrastinated for all of January 2015 then finally started writing on February 1st. I delivered the last section of the manuscript on July 30th, one day early!

Aminah and Leila.

Did you have a particular time of day you wrote, a number of words or chapters you wrote each day, a place you liked to write

Once I got going, I treated it like my full time job and wrote every day, sometimes for up to ten hours in a day. Sometimes the words wouldn’t come and I’d give myself a break then come back to it when I felt able.

Daddy and daughter.

How did you go about putting the book together

Thankfully I had kept fairly detailed diaries since I’d left home in Australia, for London in 1995. I also kept complete journals during both of my sons lives that chronicled every detail of our days as I never wanted to forget. I have a good memory but I would never have remembered the finer details without those records, especially the more traumatic times as they had been tucked firmly away in my emotional archive in order to cope and move forward. It was incredibly emotionally gruelling revisiting some of those tragic and painful times in my life.

Aminah, Scott and Leila.

The book is very honest and there are parts which must have been hard to write – how did you deal with writing the hard parts

It was a very steep learning curve. My mind works in a linear and methodical way having spent so many years in advertising agencies managing deadline driven projects, so I expected to start the book at the beginning and work my way through it chronologically. However the part before I was born relied on my mother’s diaries and I discovered they were written in shorthand which I can’t read so she had to transcribe those first meaning I couldn’t start where I had hoped. So I tried moving on the period of my life where I first got married and had my first son Marlon but the story wouldn’t come out. This was when I realised how I had wrapped up the saddest parts of my life tightly in little boxes and put them away in the recesses of my mind. At first I wasn’t ready to access those memories at all. Eventually I thought to myself, start with the happy part, the part where I had my healthy daughter Leila and then met her dad and fell in love. So I basically started at the end and wrote the whole thing back to front.

Once I’d had the reassurance from my publisher Louise that the quality of my writing was good, that gave me the confidence to delve into the sadder parts of my life story and put them on the page for public consumption. As you can imagine there were lots of tears and snot at times and I simply had to down tools, take myself for a long walk and let the memories filter back through my mind, as painful as that was. Hopefully it helped make the story authentic for readers as the emotions on the page are very real.

The media have focused on the back to front nature of your relationship with Scott and it is a lovely way to start, knowing the happy ending and working back, however, the book covers much more than that – how would you describe the book and what would you like readers to take from the book after they have read it

For me, it’s primarily a story of motherhood. Both my mother’s and my own. Our journeys to and of motherhood, the challenges, the potholes along the way but overwhelmingly of maternal love and lengths we will go to to protect and nurture our children who can bring the greatest of joy and deepest of sorrow to our lives. It is also the story of me. The racism I faced as a child and the strong and determined black woman I became despite it, nurtured by and within a loving family who gave me the tools I would need to face the unimaginable challenges ahead when it came to creating my own family.

Do you read yourself and if so, what do you like to read

Funnily enough I’ve always enjoyed tales of goodness and positivity coming out of difficult or challenging circumstances. The God of Small Things is an all time favourite. I also like reading stories that make me cry because invariably they make me think and look for the reasons for the tears which is where you so often find meaning. Tuesdays with Morrie is a good example.

What are you currently reading

I’m embarrassed to say I haven’t read a book since before I started writing my own. There was no spare time during the writing and there has been even less time since its release as I’ve been promoting it. The last book I read was Wild by Cheryl Strayed suggested to me by my publisher as a great example of how to write a memoir. I enjoyed it immensely and obviously it’s been a huge success.

What are the best things that have happened as a result of writing your book

The best thing that has happened has been the feedback from other people who have sent me messages from literally all over the world from India to Africa to the Americas and Asia, telling me how much my story has moved them, made them appreciate their lives and families all the more and given them hope, especially women who want to become mums but are still childless by chance and considering their options to create a family outside the box. I have replied to each and every message and each of them makes me believe that it was the right thing to do putting myself out there so personally by telling my life story.

The other thing has been getting the chance to read my story as a ‘reader’. Of course I still think of ways I could have bettered it but I sat on a plane to Japan and read my story for the first time. Whereas before it had just been the life I had lived, but in reading I understood why others see it as an exceptional life and exclaim my strength in not only surviving but being happy. These are the good things. The rest is just media!

Family of seven.

There has been a lot written about the ‘happy ending’ to your story – you are now married, mum to a happy and healthy daughter and part of a large family but how would you describe your life right now

I like to think of this phase of my life since meeting Scott as a happy new beginning rather than a happy ending as the media have positioned it. It’s the start of a family life I never thought I’d have. There was a time when I didn’t think marriage and family were possible for me and my wildest dreams never envisaged me as a stepmother to four other kids. Now we are a big family in a busy and chaotic household of seven plus the boys’ girlfriends and I couldn’t be happier. But, I am taking nothing for granted and still living in the moment as my sons taught me to and appreciating each and every happy day.

How I Met Your Father book cover.

Aminah’s memoir can be purchased at
Book Depository, iBooks or Amazon for the Kindle version.

Australian Story: view the documentary that started it all

A weekend to remember

This article first appeared in a 2015 issue issue of the The Information Point newsletter Our World, when Daniele Oliveri told the Information Point about an informal Italian MTM meeting that took place in Italy over the weekend of 14 and 15 November 2015.

Following the example of many CNM/MTM families all over the world three Italian families recently decided to meet each other – Alessandro Lollobrigida, his wife Claudia and their fantastic baby Mare, Ivan Tonini, his wife Chiara Deli and their amazing guy Mattia and me, my wife Marta and our handsome Francesco spent a whole weekend in Florence.

After the birth of our sons we understood that alone we lose, instead together we win, we are stronger. We are few, but it is only the beginning. At the moment we are four families but one of those was unable to attend the meeting. The community is really strong and each of us can take something from the community – experiences, advice, support. Being a part of a community allows us to feel less alone in the fight against this disease. Furthermore as a community we can look towards the world as a group and not as individual families.

Based on our experience we urge all CNM/MTM families all over the world to search for other families and gather in group. During this weekend we felt at ease. We shared the same problems, the same fears and the same experiences. It was fun to walk the streets of Florence together with ventilators, suction machines and oximeters.

We agreed to meet each other again very soon in order to spend more time together and in order to start creating an Italian CNM/MTM organisation, with the main purpose to raise funds and help research.

Special thanks to Holger Fischer, his wife Jennifer and their incredible son Emil for the inspiration.

 

Myo the traveling turtle

This article first appeared in a 2015 issue issue of the The Information Point newsletter Our World, when the the MTM-CNM Family Connection told us about Myo the Traveling Turtle.

Myo the Traveling Turtle at the MTM-CNM Family Conference.

Myo the Traveling Turtle was hatched at the 2015 MTM-CNM US Family Conference. Myo’s mission is to travel the world, visiting members of the centronuclear and myotubular myopathy community, to help us all stay connected.

The turtle is one of the oldest living animals walking the earth today. The oldest fossils of turtles are dated at over 200 million years old, so Myo is a symbol of longevity, endurance, persistence and the continuation of life (sometimes against incredible odds).

Earlier this year, the MTM-CNM Family Connection asked the CNM/MTM community to choose from a list of potential names and the name Myo was chosen – as in the word myopathy, which is derived from the Greek language, with ‘myo’ meaning muscle and ‘pathy’ meaning disease. Together the words mean muscle disease. Coincidentally, the shape of a turtle is used as a mnemonic (a learning technique that aids information retention in the human memory by translating information into a form that the brain can retain better), for the structure of the biochemical compound myoinositol, which is part of the PI(3)P lipids that play an important role in the structure of the cell membrane and signaling of muscle contraction.

Myo at Wrigley Field with the Bushey family.

Since the family conference, Myo has been on a whirlwind adventure visiting members of the CNM/MTM community where they live and raising awareness of CNM/MTM. Before leaving Chicago, Myo attended a Cubs game at Wrigley Field with the Bushey family, then traveled to Massachusetts to watch a Red Sox game at Fenway Park with the Ward family. In September Myo attended the Global Genes RARE Patient Advocacy Summit at Huntington Beach and also visited the Manny family in Rancho Cucamonga, both in California, before heading on to San Francisco to see the work being done by the biotechnology company Audentes Therapeutics, who are developing a gene therapy treatment for X-Linked myotubular myopathy – Myo also got to see the paintings that hang in the office painted by Andy Villon who has MTM.

A ten hour flight from California saw Myo attend the 20th International Congress of the World Muscle Society with many experts in neuromuscular disease and he also got to go sightseeing around Brighton. Back home in the US Myo visited the offices of Google, Facebook and LinkedIn, before traveling to see the Wood family in New York, where he visited the Bronx zoo and Botanical Gardens, visited the heart of the Red Apple, took a trip on a ferry to see the Statue of Liberty and attended Reid Wood’s Teenage Mutant Ninja Turtle-themed birthday party.

Further information

Where will Myo show up next? To keep up to date with Myo’s travels and see where he goes next, visit the MTM-CNM Family Connection website or Myo’s Facebook page.

* MTM-CNM Family Connection website
* Myo the turtle on Facebook

If you would like Myo to visit you email info@mtm-cnm.org.