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ADVANCEMENT OF RESEARCH FOR MYOPATHIES

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$147,035

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  • Janet McElroy

    $50

  • Rosalinda and Crystal

    $100

  • Kaitlyn

    $100

  • Judi and Chuck McElroy

    $100

  • Bryan McElroy

    $100

  • Lonn & Anna

    $50

  • Abtin Missaghi

    $26

  • Cara Elizabeth Yar Khan

    $440

  • Hazel Johnson

    $50

  • Jerry, Kitty and Mike Vang

    $100

  • Sue

    $50

  • Joce & Rich Tampleni...

    $50

  • Tim Simonec

    $500

  • Lance

     

  • Anonymous

    $100

  • Julie

     

  • Annie and Ray

     

  • TJ & Tara Harmon

    $200

  • Ari B. Rubin

     

  • Judy Ramsey and Jerry Kitz

    $100

  • Brian Sieve

    $50

  • Heather Hach Hearne

    $50

  • Carlos MagaƱa

    $100

  • Dutch family and lots of friends

    $770

  • Aaron, Keri, Joey, Jackso, and Jason

    $100

  • Anita Contreras

    $100

  • Fam. Hugens

    $25

  • Karen Bjorkquist

    $25

  • Anonymous

    $50

  • Mik Mon

    $100

  • Whitesell Electric

    $200

  • Alison W.

    $25

  • Jason Ritter

     

  • TRACEY SCOTT WILSN

    $100

  • Nayan Padrai

     

  • Maria Elena Rodriguez

    $50

  • Amanda Coplan

    $25

  • Anonymous

     

  • Andrea Seigel

    $25

  • Susan Hurwitz Arneson

     

  • Marcela Gutierrez

    $100

  • Dawn Prestwich

    $100

  • Nicole Yorkin

    $100

  • Dan Futterman

    $100

  • Michael Bacall

    $500

  • Damien Chazelle

    $500

  • Andrea Berloff

    $100

  • Jonako Donley & Daniel Stamm

    $100

  • TASH

    $25

  • Erin and Kirk

    $30

  • Dana Fox

    $100

  • Ryan and Anna

    $50

  • Judalina Neira

    $30

  • Erica Li

    $50

  • Billy and Sandie

    $25

  • MS

    $100

  • Gerald DiPego

    $100

  • Tripper Clancy

     

  • Anonymous

     

  • Joshuah Bearman

    $50

  • Dale and Gretchen Weber

    $50

  • Susan A. Fox

    $50

  • Greg & Stephanie Little

    $50

  • Dannille Riley

    $20

  • Rianna, Del & Rose

    $25

  • Christina Liu

    $100

  • Danica Pierce

    $20

  • Debbie Mitchell

    $39

  • The Roehrigs

    $36

  • Jim & Laina Curran

    $50

  • Jim & Laina Curran

    $50

  • Mary & Steve

    $200

  • Danielle Garza

    $25

  • Erik and Ruby Ekblad

    $50

  • Sonny salumbides

    $100

  • Scott Alexander

     

  • Chris Campbell

     

  • Negar kohandar...

     

  • Billy Ray

     

  • Ralph & Doris Gilles

    $1,000

  • Marina Weston

    $30

  • Larry & Peggy

    $50

  • Heath and Jamie

    $50

  • David Hobbins

    $100

  • Michael Wong

    $100

  • Erik & Joy Rowtliep

    $100

  • Borsheim Family

    $100

  • Nathan Brown

    $100

  • Michele Griffin

    $50

  • Jackson Sze

    $100

  • Josh Kao

    $25

  • Don Lupo

    $100

  • Renee Larson

    $100

  • KathyV

    $100

  • Steve

    $100

  • Marsden Family

    $25

  • Candice Goodie

    $25

  • Isaac Klausner and Michelle Rosenthal

    $100

  • Anne Allison .

     

  • Stephanie Wallen

    $100

  • Sarah McCarthy and Mariam Carian

    $100

  • Sharon Coates

    $100

  • Michele Marcella

     

  • Scout McDougal

    $50

  • Ed Laroche

    $50

  • Sandra & Dave

    $250

  • Heath

    $100

  • Brian, Jess and Tashie Yu

    $100

  • Michael Steinberg

    $50

  • Harley Peyton

    $100

  • Tom Schulman

    $250

  • Hugh Ryan

    $100

  • Sam Harris

    $500

  • Gary

     

  • Paulo Nigro

     

  • Louis Trygar

    $50

  • Tom Holland

    $50

  • Alex Adhami

    $100

  • Mike & Jay Ireland

    $100

  • Anonymous

    $100

  • Chris Silber

    $100

  • jonathan...

    $100

  • Gautam Vasisht

    $25

  • Anonymous

     

  • Chris Brancato

    $50

  • Chris Weitz

    $100

  • Anonymous

    $25

  • Jeroen Blom

    $50

  • Deana Derocha

    $100

  • Brie Van Conant

     

  • Anonymous

     

  • Viet Nguyen

    $100

  • Mindy

    $100

  • Patrick Morgan and Marimo Nakamura

    $100

  • Marz

    $50

  • Amy Leang

     

  • Rimonda Adhami Ebneyamin

    $100

  • Matthew Mossanen, MD

    $100

  • Asher Rabizadeh

     

  • Roya Ijadi-Ma...

    $50

  • Pam Lang

    $25

  • Meredith & Jake

    $50

  • Norman & Inka

    $100

  • Feridoon Adhami, MD

    $100

  • Nadia Adhami

    $250

  • Ella Chiang

    $50

  • Karen Au

     

  • Ryan, Kara &Ferris;

    $100

  • Tonia Davis

    $150

  • Teresa Lau

    $100

  • Jamie Linden

    $100

  • Pia Tsang

    $50

  • Deb and Rob

    $50

  • Susan Mitchell

    $25

  • Staci, Matt, Evie and Charlotte Eddy

    $75

  • Carolyn Witcomb

    $50

  • Nicole Rocklin

    $100

  • Ian Brennan and Trilby Glover

    $150

  • Blayne Weaver

     

  • Joe and Meg Forte

     

  • NonUnion Philanth...

    $100

  • Nick

     

  • Peter Blake

     

  • Pat and Kathy

    $100

  • Ava Jamshidi

    $100

  • Amanda & Steve Palley

    $150

  • Alex Goldstone

     

  • Judson

     

  • Anonymous

     

  • The Ludwig Family

     

  • Karl

    $50

  • Pama

    $800

  • Ravi Guha

    $250

  • Emma Cothren

    $25

  • Helen Rabizadeh Zaghi

    $50

  • Joe Stern

    $250

  • Akira Hatori

    $25

  • Bobby & Sandra Darvish

    $250

  • Anonymous

    $10

  • Andy V

    $50

  • gordan lauren

    $50

  • Tricia Ferguson

    $30

  • Miss Alison Laird

    $30

  • Alison Laird

    $50

  • Malhotra

    $10

  • Romina Refaeil

    $26

  • Dutch Leon

    $50

  • Chuck and Judi McElroy

    $75

  • Anonymous

    $25

  • 2 more Dutch friends

    $120

  • Bryan McElroy

    $150

  • Aarti Shah

    $50

  • Janet McElroy

    $50

  • Melinda Lui

    $150

  • Farivar Roshanian

    $50

  • Judy Ramsey- Jerry Kitz

    $100

  • 8 Dutch family and friends

    $300

  • Feridoon Adhami, MD

    $100

  • Nadia Adhami

    $250

  • Kam&Jason;

     

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Patti Engel; Engage Health
Patti Engel; … SAYS:
All the best to you as you w…
All the best to you as you work to fight this disease!
4 years ago
see more  
Bob Blum
Bob Blum SAYS:
In Honor of the Bike for Kam…
In Honor of the Bike for Kam Event
5 years ago
see more  
ADVANCEMENT OF RESEARCH FOR MYOPATH...
CROWDRISE : Jun 27, 2010
EIN: 95-4837946
BASED: Encino, CA, United States

CHARITY WEBSITE: www.hibm.org

ADVANCEMENT OF RESEARCH FOR ...

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This page

Our Mission

Support our mission by creating your own fundraiser.

Hmmm, a non-profit started by two brothers who 10 years ago found out that they have a debilitating and progressive condition, so they set up shop to try and cure their own disease for themselves and others in the world? Hmmm, sounds inspiring. Please read on.

So what was it those doctors had?

They realized they had Hereditary Inclusion Body Myopathy (HIBM), heterogenous group of rare/orphan genetic neuromuscular disorders. Unlike Muscular Dystrophy, which is skeletal muscle weakness, HIBM is characterized by muscle weakness developing in young adults, causing progressive and severely DEBILITATING muscle wasting that can lead a patient to quadriplegic state within 10 - 20 years. WOW!!

HIBM is also categorized as an Orphan Disease... RARE, and not the type of rare that people will pay big bucks for; like gems and rubies, but the type of rare that is not perceived as profitable by pharmaceutical industry, therefore not researched or studied. According to US criteria, an orphan disease is one that affects fewer than 200,000 people. And so, here we are. All rare and stuff with no one to help. Double WOW!

In an effort to advance research, and thus a cure for HIBM, those same two brothers, Dr. Daniel Darvish and Dr. Babak Darvish, founded ARM (Advancement of Research for Myopathies) and molecular lab, HRG (HIBM Research group) in an effort to advance research and a cure. Since, ARM has been paving hope towards a cure with the undeniable realization that treatment and/or CURE is possible within our lifetime. It is a very serious mission.

BUT WE NEED HELP. we can't do it alone. You might be asking, how can I help? Well, start your own fundraising page right here! Every dollar helps and every dollar brings hope to muscles that are slowly dying every day. Do a race, bake sale, rock concert, art show, biking, skydiving...anything you can dream up either big or small, everything helps.

To the left are some pictures of patients. In the pictures they look fine and all healthy, though they are super cool people, we assure you it is a daily struggle as they watch their own bodies become dependent on first; a cane, then leg braces, then a wheelchair and then, for some, confined to a bed. Please join us today.

www.hibm.org
Contact Kam if you are looking to help, but just don't know what to do.
email: kimkam.design@gmail.com

EIN: 95-4837946 • www.hibm.org

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