Rare Disease Day Press Release Cryoglobulinemia

Media Announcement February 27, 2013
Alliance for Cryo and Propp Solutions
www.allianceforcryo.org and www.proppsolutions.com
Contact: Eileen Propp
(925) 381-8750


Thank you for agreeing to publish and host the materials created in honor of National Rare Disease Day. We have five different videos published and available for hosting on your site(s). Each video is listed below with a summary, video length and direct link to embed on your site. Please let me know if you have any questions or need any more information. Your support is very much appreciated.


1. Be Rare!: A Cryoglobulinemia Public Service Announcement:

Video link: http://youtu.be/t56kaPfjbeo

Embed link: <iframe width="560" height="315" src="http://www.youtube.com/embed/t56kaPfjbeo" frameborder="0" allowfullscreen></iframe>

1:30 minute video uses footage of people living with cryoglobulinemia. It shows the strength, beauty and difference of people with cryoglobulinemia.

Featuring: Dr. Monach of Boston University & Vasculitis Clinical Research Consortium.

Producer: Matt Hanlon, www.thoughtfulduck.com

Sponsored by: www.allianceforcryo.org & www.ProppSolutions.com

Alliance for Cryoglobulinemia was co-founded by Marianne Vennitti & Eileen Propp

2. Cryoglobulinemia Explained: Paul Monach, M.D.

Video link: http://youtu.be/ntLD6dLVDr0

Embed link: <iframe width="560" height="315" src="http://www.youtube.com/embed/ntLD6dLVDr0" frameborder="0" allowfullscreen></iframe>

16 minute video

In this inverview Dr. Monach explains how cryoglobulinemia affects the blood vessels, causes damage and is treated. Cryoglobulinemia is rare, not well known and can cause serious health issues for thos living with the disease.


3. Cryoglobulinemia Simulation:

Video link: http://youtu.be/YZm5xO5D7AU

Embed link: <iframe width="560" height="315" src="http://www.youtube.com/embed/YZm5xO5D7AU" frameborder="0" allowfullscreen></iframe>

1:21 minute video uses art and stop motion photography to explain the science and how a rare autoimmune disease called Cryoglobulinemia works. Cryoglobulinemia is a type of vasculitis or blood vessel damage. Eileen Propp, coordinator has lived with this disease for 16 years.

Artist: Amy O’Hanlon http://aeohanlon.carbonmade.com

Producer: Matt Hanlon www.thoughtfulduck.com

4. Living with Cryo: Eileen Propp Trailer

Video link: http://youtu.be/-cMJdqZuC8A

Embed Link: <iframe width="560" height="315" src="http://www.youtube.com/embed/-cMJdqZuC8A" frameborder="0" allowfullscreen></iframe>

2:49 minute trailer video for full length feature below.

5. Living with Cryo: The Story of Eileen Propp

Video link: http://youtu.be/27C9ihSHgec

Embed Link: <iframe width="560" height="315" src="http://www.youtube.com/embed/27C9ihSHgec" frameborder="0" allowfullscreen></iframe>

Full length feature 29 minutes

Description: Eileen Propp was diagnosed with Essential Mixed Cryoglobulinemia (EMC) at the age of 26. Propp’s life up until that moment had been characterized by mysterious ailments, unexplained sickness, injuries and misdiagnosis. Since her diagnosis of EMC, she has gained an understanding of the disease and how to manage it. Propp, 41, has endured some 30 plus surgeries, surgical procedures, numerous broken bones, blood clots, internal injuries, heart failure and various misdiagnoses. She has also obtained a Ph.D., been an American Sign Language interpreter and an advocate for people with disabilities. This documentary tells the story via interviews with Propp, her family, friends, coworkers, and clients. It examines the physical, emotional and psychological aspects and impacts of living with a rare disease. Propp continues to live as a fierce self-advocate for herself and others while refusing to let her disease define her. She lives with her husband and service dog in the Bay Area of California.

Featuring: Dr. Monach of Boston University & Vasculitis Clinical Research Consortium.

Artist: Amy O’Hanlon, Artist http://aeohanlon.carbonmade.com

Musician: Lauryn Newson, Lauryn@uoregon.edu

Producer: Matt Hanlon, www.thoughtfulduck.com



About Alliance for Cryoglobulinemia:

Co-founded by Marianne Vennitti and Eileen Propp. Alliance for Cryoglobulinemia is an inclusive network of patients, caregivers, family, friends, medical professionals and other supporters dedicated to improving the quality of life for people with cryoglobulinemia. Our goal is create a platform that links to all efforts, campaigns, research, support and other resources related to cryoglobulinemia. We utilize community networking, crowd-funding, peer to peer support and social media to advocate awareness, patient support, education and research. We hope these efforts will provide better treatments for patients and lead to the cause and a cure.

About Propp Solutions:
Eileen Propp founded Propp Solutions in 2012. The practice focuses on the intersection of people with disabilities and organizations. Propp Solutions is a consulting practice dedicated to teach advocacy, empowerment and positive organizational psychology to people navigating life and disability. Propp Solutions strives to educate health care companies how they can empower their patients to advocate for themselves.


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