"United, even the weak become powerful." Friedrich Schiller
Let us be strong together
Maybe you think now, "again this worn-out slogan "Strong together" ... everyone uses This and I can hear it soon no more ...
No matter how often we should read or hear this saying, it will always hold, its justification and it will only work with "TOGETHER STRONG i.e. to complement each other in strengths".
But what does it actually mean to be strong together?
Suddenly, countless terms come to mind and the dimension is impressive.
Coming together, getting involved, being there for each other, listening, supporting, complementing in strengths, taking the burden off the shoulders of others through support or distributing it better and thus creating free space, strengthening each other, promoting social cohesion, researching, shaping together, bringing about change, creating transparency, informing, motivating, creating hope, inspiring and investing.
It all started with a raised diagnosis
On February 19, 2014, Jennifer Bilbao and Holger Fischer's little Emil saw the light of day. Overjoyed parents. But something was wrong, Emil had to be taken to the intensive care unit right after birth. A muscle biopsy then brought a diagnosis of "myotubular myopathy (MTM)" - a very serious and rare disease.
It is easy to understand how sad and lonely Jennifer and Holger must have felt at that moment. They wanted to create a life worth living and happy for their Emil, soon they found information about the Myotubular Trust, discovered promising research results and hope germinated in them.
They both said to each other "A dream you dream alone is just a dream. A dream that you dream together becomes reality." (Yoko Ono) and founded the association "ZNM - Zusammen Stark! e. V." to network affected families in Germany as well, to give them hope for a cure for their children and also to raise money for research.
Jennifer and Holger attended the Family Conference on Myotubular Myopathy and Other Centronuclear Myopathies in Frankfurt on a sunny weekend in May 2016. 45 families from 12 countries were present, 16 researchers from Germany, France, the Netherlands, the UK, the USA and Canada and little Emil was also there. It was wonderful and very happy hours in Frankfurt also for Emil.
On the way back from the family conference, Emil died suddenly. He was only 2 years old. In the hearts of his parents Emil lives on. They are very grateful for the time they spent together with their little Emil.
Living and not just surviving
Among all the many fates, the story of Jennifer and Holger with their little Emil touched me very much.
I was impressed by how they found the strength through Emil to do everything they could to ensure that Emil could have a beautiful and fulfilling life, living happily and not just surviving. Despite all the enormous challenges (examinations and surgeries) Emil had in his short life, he accepted them with serenity and bravery. Emil could not only enjoy wonderful little things like colorful pictures, the rustling of leaves on the trees and the gentle petting of animals, music put a smile on his face, mommy's hair and daddy's nose fascinated him and he was also allowed to visit researchers in Strasbourg, went to daycare and made wonderful friends there. Emil was able to communicate with kisses, with clapping as an expression of applause and with sign language and has shown his parents to often look at and love the world from a completely different "barrier-free" point of view.
Jennifer and Holger became ambassadors for their vision and their "utopian" dream that people with Emil's muscle disease, myotubular myopathy, will one day be able to walk after all.
Since other parents in Great Britain and the USA have already had this dream, which they hope will come true in the not too distant future, and have founded initiatives there to raise funds for research, they both networked with you. Why shouldn't such a valuable initiative also exist in Germany?
Now the work really started. They collected a lot of information about the rare disease, much of which was previously only available in English, and built up their association ZNM - Zusammen Stark! e. V..
They knew that together they could be strong, get involved and together make the world a little bit more livable and change it. They did it for their little beloved Emil.
Emil's parents have not been alone for a long time and have received versatile, dedicated and energetic support. Morice (2016) the son of Mareen (vice chairwoman of the association) and Uwe was also born with Myotubular Myopathy. Frank and Meike Schulte also received the devastating diagnosis DNM2 centronuclear myopathy for their little Michel (after only 20 months). Bärbel, Carl-Philipp, Marian, Thomas, Johann, Nicol, all of them and many other committed helpers, families and researchers stand together in the association ZNM - Zusammen Stark! e. V. and together they do really great things.
A lot of (free) time, inspiring ideas, constant persistence, bundled know-how, networking, building up contacts and finally also money and donations have already been invested in this lived mission and vision and of course the goal is far from being reached.
It needs great people and impressive ways of thinking, these bundles the association ZNM - Zusammen Stark! e. V.
Chapeau! That is worth great respect and all respect.
In June 2023, ZNM - Zusammen Stark! e. V. will celebrate its 8th birthday and by now the association already represents affected people from Germany, the Netherlands, Austria, Belgium and Switzerland. Here, the saying "I wish you good health" has taken on a whole new meaning.
A very important goal of the association is also to promote research for possible therapies through donations and this made it easy for us to decide to become a family member of exactly this association and thus support this dream.
I myself also received a diagnosis of a rare genetic neuromuscular disease. I was diagnosed with a rare genetic neuromuscular disease based on my symptoms and a whole genome sequencing. I am very grateful that there are such wonderful initiatives like ZNM - Zusammen Stark! e. V., that Jennifer and Holger have implemented their vision and that we are not alone and can be strong together.
As Ryunosuke Satoro (Japanese poet and writer) said so beautifully "Each individual is a drop, together we are a sea."