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M-CM NETWORK's Fundraiser:

Send this rare disease ambassador to the UK to meet M-CM families

M-CM NETWORK's Photo
M-CM NETWORK's Photo
M-CM NETWORK's Photo
M-CM NETWORK's Photo
M-CM NETWORK's Photo
 

Goal adjusted, help us meet it!
December 22, 2016

Here is a page from the M-CM Network calendar for 2017 that features Jordan's trip and the families she visited. We've done the accounting for  See more

BENEFITING: M-CM NETWORK

THE STORY:

Rare disease patients form powerful bonds online, and Jordan feels like a big sister to many young people with M-CM syndrome, an ultra-rare condition that is known to affect under 200 people worldwide. Help us send Jordan to the UK to a gathering of M-CM patient families.

Jordan is an amazing young woman who loves the online world of fandoms.  She is also an avid fan fiction author with quite a following online.   Jordan was born with a rare syndrome called macrocephaly-capillary malformation syndrome (M-CM) that was not accurately diagnosed until she was 21.

Since her diagnosis with M-CM she has become an active member of the online M-CM rare disease community. M-CM is a condition that was first defined in the late 1990s, so the majority of people with a diagnosis are young children. Under 200 people have been diagnosed worldwide.  Because Jordan is an older person in the world with M-CM, she stands in a particularly unique place within the growing M-CM online community.  Jordan greets new families coping with this diagnosis with love and cheer, and provides reassurance and comfort.

This summer, UK families plan a meeting at 2016 M-CM UK Family Day at Alton Towers, in Staffordshire. You can help us send Jordan and her family to the UK for this event.

After their trip, Jordan's father will make a short 5-10 minute documentary film about Jordan's journey that will be available online and help educate people about the experience of having M-CM.

This fundraiser supports the M-CM Network, a US 501(c)3 non-profit.
 

DONATE

To This Fundraiser

$3,522

MONEY RAISED
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  • Signe Collins & Family

     

  • The Sandersons

    $100

  • Mellenee Finger

    $50

  • Sandra Nedeleff

    $25

  • Chrissie, Sherrie and Eamonn

    $50

  • Amanda Jorgensen

    $25

  • Olivia and family

    $50

  • The Hole Family

    $10

  • ann &kevin oneill coras granny &ganga

    $25

  • Anonymous

    $25

  • Stuart Claire & Cora

    $100

  • Elin and the Bach Family

     

  • Brittany

    $25

  • Cameron Higgins

    $20

  • Luke McCulloch & Family

    $50

  • Kathryn Campbell-Kibler

    $100

  • The Heder-McGrew family

    $50

  • Pam oliver

    $50

  • Wanda Gaines

    $25

  • Glenn

    $50

  • Jordan, Kelly & Michael Hosack

     

  • Kenzie Bennett & family

     

  • Elizabeth Hauger & Family

     

  • Shannon MacCormac and family

    $50

  • Kamille Brown

    $100

  • Elizabeth Lowney

    $50

  • The Silversteins

    $100

  • Anonymous

    $100

  • Jane and Rowland Van Es

    $100

  • The McLean Family

    $150

  • Field Family NZ

     

  • Anonymous

    $50

  • Linda Naranjo-Huebl

    $50

  • Anonymous

    $25

  • Emily

    $50

  • Anonymous

    $100

  • Maddalena Family

     

  • LaGrands

     

  • Grandpa and Grandma K

     

  • The Anderson Family

     

  • Jennifer Arnold

     

  • Anonymous

    $100

  • Kiel and Nadeen Brown & Family

    $100

  • Anonymous

     

  • Randy & Kathy Buist & family

     

  • Alicia

    $50

  • Anonymous

    $25

  • Mary (and Will) Shudy

    $25

  • Summer and Andrew

    $25

  • The Tiritillis

    $50

  • Sarah Sizemore, MCAP patient

    $40

  • The Skillens

    $100

  • Dawn Fovargue

    $50

  • Anonymous

     

  • Jessica Collins

    $25

  • Aubin family

    $250

  • deb ulmer

    $25

  • Hughes

    $50

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50% Raised of $7,000 Goal

Donor Comments

Hughes

Hughes

DONATION: $50

To Support Cora and all her M-CM family 2 years ago

deb ulmer

deb ulmer

DONATION: $25

2 years ago

Aubin family

Aubin family

DONATION: $250

Bless you Jordan for serving your M-CM family in this way. 2 years ago

Jessica Collins

Jessica Collins

DONATION: $25

2 years ago

Anonymous

ANONYMOUS

To support Robin and plenty of others! 2 years ago

Dawn Fovargue

Dawn Fovargue

DONATION: $50

2 years ago

The Skillens

The Skillens

DONATION: $100

2 years ago

Sarah Sizemore, MCAP patient

Sarah Sizemore, MCAP patient

DONATION: $40

2 years ago

The Tiritillis

The Tiritillis

DONATION: $50

2 years ago

Summer and Andrew

Summer and Andrew

DONATION: $25

2 years ago