It is often said that when groups, communities and individuals come together, great things can happen.
That notion couldn’t be more true in the partnership of Converse and Maddie Riewoldt’s Vision, who have joined forces in the fight against Bone Marrow Failures Syndrome, a condition that tragically took the life of Maddie Riewoldt in 2015.
Together they #fightlikemaddie – by creating awareness, raising funds and allowing us all to get involved in what is truly an incredible cause. Converse and Maddie Riewoldt’s Vision have partnered for the third year to create a limited-edition range of footwear, $40 from each pair purchased will go towards a cure for Bone Marrow Failures Syndrome.
To date, Converse have raised $40,000 and in 2018, have doubled the amount to be donated from each sale to accelerate their support for vital research into Bone Marrow Failures Syndrome.
After the success of the past two years, Converse have committed to evolving the partnership with new designs for the whole family, including absolutely adorable kids sizes
Converse, the most iconic and recognisable sneaker in the world, creates a vehicle for Maddie Riewoldt’s Vision to reach an enormous community – including some of the biggest names in sport, hospitality, media and fashion.
I had the honour of meeting CEO of the foundation Nicky Long, and sit down for an interview to look into what we can all do to get involved …
For those who don’t know about this amazing foundation, please tell us the story of Maddie’s Riewoldt’s Vision
Following the tragic death of Maddie Riewoldt on 24th February, 2015, Maddie Riewoldt’s Vision was founded by the Riewoldt family in June 2015. In collaboration with the Snowdome Foundation (an NFP that funds research into new treatments for blood cancers), Maddie Riewoldt’s Visions aims to raise funds to #fightlikemaddie and find new treatments for Bone Marrow Failure. The Vision aims to ultimately find a cure for the syndromes that affect younger Australians each year.
Maddie Riewoldt lived with Aplastic Anaemia for only 5 years. There are no words on a page that can do justice to Madeleine Riewoldt’s life. It’s almost as if she knew she wouldn’t be here for long, and burned brighter because of it.
Maddie never did anything by half, and it was the simple things that gave her most joy; family, sport, friends and weekends at the beach. But with as much passion as she loved life, she hated being controlled by this Bone Marrow Failure Syndrome.
Bone marrow is an organ in the body that keeps your blood healthy; producing red and white blood cells and platelets that carry oxygen around your body and help fight disease. When you have a Bone Marrow Failure Syndrome your bone marrow stops producing and it’s only through repeated blood transfusions and bone marrow transplants that people can hope to survive. For 5 long years Maddie fought this disease bravely.
Everyone around her was amazed at how she would fight and the depths of her resilience.
And because of this, we always thought she would beat it. In the end, when Maddie knew her fight was ending, she just wanted to make sure her suffering would make a difference. Maddie Riewoldt’s Vision is that difference.
Our organisation has been created to support the understanding of Bone Marrow Failure Syndromes and to help those suffering from the disease and continue towards our ultimate goal – finding the cure.
Maddie fought her battle with inspiring determination and courage. It’s now up to us to put our heads down and lift our hearts and #FightLikeMaddie Maddie Riewoldt’s Vision has been established to help adolescents and young adults suffering from Bone Marrow Failure Syndromes through research and providing support into treatments, prevention and with an aim to finding a cure.
Maddie Riewoldt’s Vision is focused on finding a cure for Bone Marrow Failure. Bone Marrow Failure is diagnosed in 160 young Australians each year and many more live with intolerable management of their condition.
While relatively rare compared to some other life threatening illnesses, half the people diagnosed will not survive. Those that do survive the brave battle, remain on poorly tolerated treatments and are managed over many years.
The treatments for Bone Marrow Failure are very toxic and inconvenient. Maddie’s Vision is determined that new, better tolerated and successful treatments can be found – increased survival and cured. We live in an era of extraordinary medical technology and the time is right to connect the brilliant minds to the technology to make this happen.
The foundation has done amazing work, with what is truly an unbelievable and loving community behind it – could you tell us about some of the work that has been done and the goals ahead?
Bone Marrow Failure is a multi-faceted disease. Due to its complexities, Maddie’s Vision has been deliberately focused on five pillars of research. To date, 13 research projects have been committed to and these projects are investigating the multiple problems – one of which is the influence of genetics.
Some Bone Marrow Failures are genetically inherited. Since Maddie’s Vision was founded, they have been the sole funder of the only global National Aplastic Anaemia Registry. This important project collects diagnosis of Aplastic Anaemia (a type of Bone Marrow Failure) and it is due to this project, that several others have been able to obtain and leverage funding from other sources. We will be expanding this to include all other BMFS conditions in 2019.
Specifically, as a result of the work produced from this funding, The Flagship in Genomics for Bone Marrow was supported by a major grant. The information from the National Registry enabled the Flagship project to seek other funding from the State government. The Flagship is also the supportive mechanism behind one of the projects Maddie’s Vision is funding in genomics with Dr Piers Blombery.
Indeed, many of our projects are interconnected and form the basis of the reason the Victorian State government, through Minister Jill Hennessy, pledged $2.1m towards creating and curating a virtual Centre of Research Excellence in furthering understanding of Bone Marrow Biology.
How did the partnership with Converse start?
A long time friend of the Riewoldt family, Rachel Kraksy approached us at the end of 2015 and offered Converse support. Rachel is the marketing manager for Converse Australia and knew Maddie.
Together with the team at Converse, the Maddies promotion has created a wonderful movement and its been one of the most successful promotions they have done. We are really grateful for now 3 years of support and to our community who have got behind us.
For those who want to help and get involved – what can they do?
Purchase a pair of ConverseXMaddiesVision shoes online or in specific stores and $40 from your pair purchased will be donated to Maddie’s Vision. Tag us on social media with your purchase.
Beyond this, there are so many ways to get involved including hosting events, volunteering, fundraising, buying merchandise and attending our events.
We have more information on our website www.mrv.org.au
Image courtesy of Karon Photography