How You Can Help Sarah and Others Like Her

June 7, 2013
Sarah Murnaghan has just weeks, or even days, to live unless she receives a lung transplant. Photo courtesy of ABC.com & Murnahan family

Sarah Murnaghan has just weeks, or even days, to live unless she receives a lung transplant.
Photo courtesy of ABC.com & Murnahan family

Over the past week or two, the nation has become enthralled by the story of Sarah Murnaghan, a 10-year-old with end-stage cystic fibrosis. Doctors say that Sarah has only weeks, or possibly days, to live unless she receives a lifesaving lung transplant. The images of Sarah are remarkably gripping as she lies with her friends and parents while on an oxygen machine. Our hearts truly go out to Sarah and her family.

But, the story hasn’t necessarily been centered on Sarah and her wait; rather, news media have focused on the system for organ allocation that is established by the Organ Procurement and Transplantation Network (OPTN). OPTN guidelines for transplantation are extremely intricate and complex, but one area that has drawn particular attention has to do with the age of potential recipients. To make a long explanation short, OPTN guidelines allow Sarah to receive lungs from a child but restrict her ability to receive a transplant from an adult. This drastically decreases the potential for Sarah to receive a lifesaving transplant.

The media coverage and national discussion surrounding the OPTN rules have created a storm of controversy which has prompted a U.S. District Court Judge to order an exception to the current organ allocation rules to allow Sarah to receive adult lungs if an appropriate match becomes available.

The Murnahan family as they wait for a second chance at life for Sarah.

The Murnahan family as they wait for a second chance at life for Sarah.

Unfortunately, a relatively small portion of this discussion has focused on the overwhelming need for Americans to register as lifesaving organ and tissue donors. The fact of the matter is that the supply of transplantable organs is vastly insufficient because not enough people say “Yes” to donation. Right now, there are thousands of families across the United States who are desperately waiting – just like Sarah and her family – for a lifesaving transplant. And, unfortunately, many of these families will needlessly lose their loved ones because they did not receive a donated organ in time. This is a problem that we can – and should –  fix.

So, if you’re outraged that someone like Sarah may not receive a lifesaving transplant, I’d encourage you to look at your license and reflect on whether or not you’re a registered donor. We can’t help kids – or adults – like Sarah unless all of us take the time and effort to make the selfless decision to help others through organ and tissue donation.

Until then, we will continue to read stories about those waiting and see images of kids and adults barely hanging onto life while hoping for a selfless donor.

Read more about Sarah and her wait for a lifesaving transplant at http://bit.ly/11scK3M. Register to be an organ and tissue donor at http://www.GiftofHope.org or http://www.DonateLife.net.

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Joey Mayer: An Inspiration To Us All.

May 12, 2010

(L-R) Steve, Lacey, Secretary White, Astellas representative and Joey

A loving brother and son. An active donor advocate.  A lung recipient. Joey Mayer was a true inspiration.

Our condolences go out to Joey’s family and his friends.

You may view Joey’s appearance in the Life Goes On PSA here.


The Power of Individual Stories

April 30, 2010

Another successful National Donate Life Month comes to an end today. Throughout the month, we’ve heard amazing stories and staggering statistics to encourage people to donate life and to honor donors and the lifesaving gifts they have shared.

The Washington Regional Transplant Community (WRTC) produced an excellent series of videos that highlights many of these personal stories. “30 Days, 30 Stories” shared a new video each day during the month of April. In the videos, people affected by donation discuss their own experiences. It’s so powerful to view and listen to these 30 stories in one place. You may view the videos on WRTC’s YouTube channel.

Although National Donate Life Month is ending, we all know encouraging others to become donors is a nonstop effort. Everyone’s connection to donation is unique and each person’s story is different. But as a community we come together to celebrate the gift that is organ/tissue donation.

-Nick

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Organ and Tissue Donation Social Media Resource Guide

June 8, 2009

Donate Life Organ & Tissue Donation

Social Media Resource Guide

This post is intended to provide a comprehensive list of links to official Donate Life affiliated organizations that have a presence on the social media platforms designated below. This post can also quickly be accessed by using the following URL:

http://budurl.com/DonationSocialMedia

NOTE – This post will be updated regularly as we are made aware of new resources, profiles and sites. If you are a representative from an organization affiliated with Donate Life America and would like us to add your site or profile to our listings, please leave a comment with a link to your site or email us at donatelifeillinois@gmail.com. Thanks!

-Nick

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DLASite

Web sites

www.DonateLife.net

_________________________________________

facebook-64x64

Facebook Pages

Donate Life America

Donate Life Arizona

Donate Life California

Donate Life Colorado

Donate Life Connecticut

Donate Life Georgia

Donate Life Illinois

Donate Life Indiana

Donate Life Maryland

Donate Life Nebraska

Donate Life New England

Donate Life New Jersey

Donate Life Northwest

Donate Life Oklahoma

Donate Life Pennsylvania

Donate Life Tennessee

Donate Life Today

Donate Life Vermont

Donate Life Virginia

Donate Life Michigan

Gift of Life Michigan

LifeBanc (Ohio)

Lifeline of Ohio

UNYTS (Donate Life New York)

Donate Life Rose Parade Float

American Transplant Foundation

Washington Regional Transplant Community

_________________________________________

Facebook Causes

Donate Life America

Donate Life California

Donate Life Connecticut

Donate Life Florida

Donate Life Illinois

Donate Life Maryland

Donate Life Michigan

Donate Life New York

Donate Life Northwest

Donate Life Ohio

Donate Life Utah

Donate Life Virginia

Gift of Life MOTTEP

LifeBanc (Ohio)

American Transplant Foundation

_________________________________________

Facebook Groups

Donate Life Alaska

Donate Life California

Donate Life Colorado

Donate Life Florida

Donate Life Illinois

Donate Life Kentucky

Donate Life Maryland

Donate Life Minnesota

Donate Life New Jersey

Donate Life Northwest

Donate Life Ohio

Donate Life South Carolina

Donate Life Tennessee

Donate Life Texas

Additional Resources:

2009 National Donation Campus Challenge

Do It Now Ohio

Gift of Life Campus Challenge

Awareness About Tissue & Organ Donation

_________________________________________

youtube-64x64

YouTube

Donate Life America

Donate Life Arizona

Donate Life California

Donate Life Colorado

Donate Life Florida

Donate Life Illinois

Donate Life Northwest

Donate Life Virginia

Gift of Life Michigan

UNYTS

Washington Regional Transplant Community

Additional Resources:

National Donor Memorial

UNOs

American Transplant Foundation

_________________________________________

myspace-64x64

MySpace

Donate Life America

Donate Life Arizona

Donate Life California

Donate Life Florida

Donate Life Hawaii

Donate Life Illinois

Donate Life Kentucky

Donate Life Minnesota

Donate Life Mississippi

Donate Life Nebraska

Donate Life New England

Donate Life New Jersey

Donate Life Northwest

Donate Life North Carolina

Donate Life Ohio

Donate Life South Carolina

Donate Life Texas

Gift of Life (Pennsylvania)

Intermountain Donor Services (Utah)

_________________________________________

twitter-64x64

Twitter

Donate Life Arizona

Donate Life California

Donate Life Georgia

Donate Life Hawaii

Donate Life Illinois

Donate Life Indiana

Donate Life MN

Donate Life NJ

Donate Life New England

Donate Life OH

Donate Life TN

Donate Life Utah

Donate Life Rose Parade Float

Donate Life Plate (Colorado)

Donate Life Vermont

Gift of Life (Pennsylvania, Deleware, New Jersey)

UNYTS

Yes Idaho

Washington Regional Transplant Community

Heartman (Gift of Life Mascot)

Additional Resources:

DonorDudes

American Transplant Foundation

_________________________________________

wordpress-64x64

Blogs

Living Legacy Fund

Donate Life Colorado

Donate Life Illinois – I am. Are you?

Donate Life Minnesota – The Source

Donate Life Northwest

Donate Life Organ & Tissue Donation (Donate Life California)

Donate Life Utah

Additional Resources (Active Donation Blogs):

Texas Transplant Society

Revive Hope

Bob’s NewHeart

Greatest Gift Foundation

Donor Cycle

Merv Sheppard’s Transplant Network

Cathy Doheny – Examiner

The Transplant Awareness Daily

_________________________________________

Additional Discussion Boards/Forums/Social Network Communities

TransplantBuddies

Transplant Cafe

_________________________________________

Organ Donation Mascots

morgan02png_small

Morgan D' Organ

Morgan D’ Organ – Facebook

Morgan D’ Organ – YouTube

Heartman

Heartman

Heartman (Donate Life PA) – Facebook Profile

Dottie T. Dot

Dottie T. Dot

Dottie T. Dot (Donate Life WI) – Facebook Profile

Honey Bee

Honey Bee

Lifeline of Ohio (Web site)

Donorsaur

Donorsaur

Donorsaur (Donate Life TN)

Social Media Resources

Twitter 101 Business Guide

How to Use Facebook for Business

YouTube Nonprofits

Social Media Today

Mashable

Inside Facebook

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Put Your Hands Together!

May 15, 2009

We’re proud to announce that our video about double lung transplant recipient Steve Ferkau and his donor Kari (Steve’s Story – The Circle of Life) has placed second in the “online shorts” category for the first annual Donate Life Hollywood Film Festival!

In addition, HUGE congrats to Steve for being awarded with the Health and Human Services Medal of Honor for his commitment to helping promote organ and tissue donation.

-Scott

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I Heart Organ Donors

March 25, 2009

i_heart_organ_02Earlier this month, I posted about a fun video we were pulling together for April to help call attention to National Donate Life Month. We hope to get as many people as possible to watch the video and respond with a short video response or comment explaining why they support organ donation.

A huge, huge thanks to (in order of appearance) Steve, Mike, Derek, Tricia, Colette, Lia, Meghan, Nicole and Melissa for helping us pull this off. Each person shares a very special tie to the organ donation community and we’re extremely grateful for their help (not to mention stellar skills in front of a camera).

Be sure to check out the video below and share this link ( http://www.youtube.com/watch?v=UrEsE6riIVc) with everyone you know to help get the word out about helping save lives!

Thanks!
Scott

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Hustle, Hearts and Hugs

February 27, 2009
Melissa with Kari's Klimbers

Melissa with Kari's Klimbers

Last weekend was the annual Hustle up the Hancock. The event is hosted by the Respiratory Health Association of Metropolitan Chicago and brings together over 4,000 people to climb to the top of the John Hancock Center to raise funds for lung disease research, advocacy and education.

This event is always a special one for lung transplant recipient Steve Ferkau as he climbs 1,632 steps to the top to honor his donor, Kari. This year was made particularly special as Steve was joined by a couple new fellow transplant recipients, Melissa and Megan.

Hop over to Revive  Hope to check out Melissa’s post on her experience. In addition, be sure to check out these Northwest Herald article’s on Megan (part 1 and part 2). Congrats to Megan and Melissa and everyone that joined Steve on on the journey to the top!

-Scott

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