The Mission Massimo Foundation has major news from Mission Control in Melbourne Australia this month. Over the last few weeks, they have been working with a long-running and respected life documentary series on Australian TV–The Australian Story. The show approached them for the great honor of being selected for an episode. Their episode, “Decoding Massimo” will air on Monday, October 21st, 2013 and will cover the diagnostic journey of patients in the USA and Australia.
Last week Dr Ryan Taft (University of Queensland) and Mission Massimo President, Stephen Damiani, had the pleasure of meeting the McLaughlin family in Los Angeles. Marissa (11 – left) and Mahrynn (7 – right) have the same newly classified condition as Massimo – Hypomyelination with Brain stem and Spinal cord involvement and Leg spasticity (HBSL). The McLaughlin family has been alone and without a diagnosis for their girls for over a decade. When the HBSL paper was published in the American Journal of Human Genetics earlier this year– their isolation finally ended. The team members behind this diagnosis have already gone on to identify another previously unclassified disorder ending the isolation for dozens more families and this is just the beginning.
With so many great causes out there the foundation knew they needed to cut through the clutter to raise awareness of their mission. To exponentially accelerate the discovery of novel genetic variations responsible for unclassified paediatric white matter disorders and translate these into clinical treatments.
So… they thought they would try something a little out of this world… something like sending someone into space…
After many long months of pre-flight preparations the Mission Massimo Foundation has just launched a strictly limited raffle of only 250 tickets for a truly life changing experience. A sub-orbital space flight on the Space Expedition Corporation XCOR Lynx Mark II from the Mojave Space Port in the United States.
A single ticket can be purchased for AU$1,000, or purchase 5 tickets for AU$5,000 and receive the 6th ticket free or you can purchase 10 tickets for AU$10,000 and receive the 11th, 12th and 13th tickets free. (VIC Permit No. 10914/13 | NSW Permit No. GOCAU/1476 | SA Permit No. M12642).
Passenger Registration: https://www.missionmassimo.com/
Alternately, if you’re setting yourself a personal challenge, be it a Ride, Swim, Walk, Marathon or Iron Man, and need a little extra motivation, we have it covered. If you select the Mission Massimo Foundation as your charity, through our fundraising partner GoFundraise, we want to thank you for your support by giving you the opportunity for the ride of your life. Raise $2,000 and receive one (1) raffle ticket, raise $5,000 and receive three (3) raffle tickets, raise $10,000 and receive seven (7) raffle tickets.
“We have shown there is no technical constraint preventing us from achieving our goal of reducing the number of unclassified white matter disorders to less than 10 percent before the end of the decade,” says President Stephen Damiani. “Each raffle will raise enough funds to sequence and analyse fifty familial trio exomes and we’re pretty confident we’ll raise awareness of rare genetic disorders along the way. We also take this opportunity to thank the dozens of associates, clinicians, collaborators, partners and researchers who have worked tirelessly over the past four years to make this dream a reality.”
|The Mission Massimo Foundation is registered Health Promotion Charity with the Australian Charities and Not-For-Profits Commission and holds Deductible Gift Recipient status with the Australian Taxation Office. Our aim is to accelerate the discovery of novel genetic variations responsible for paediatric white matter disorders and to translate these findings into clinical treatments.|