M.A.S.O.N.

Mason’s Awareness & Support for Osteopetrosis Network

This is a place for parents to obtain information and stories from other families who have endured the journey of Malignant Infantile Osteopetrosis. When we were diagnosed, we had no one who understood what we were going through. As we have grown, we have developed a very close knit group of families who have had children with MIOP. Some are here in the US, some are International, but all are loving people who want to support one and other. I will update this page as we gather more families together.

The stories are very personal and have a variety of different outcomes. If anyone is interested in speaking to an individual family, you can send an email through this website and we can arrange the communication.

Please see visit our MIOP Moms Facebook page and learn all about our families from Ecuad First Patient/Family Symposium Oct 2013 or, Croatia, England, France, Peru, Australia, New Zealand, Canada and all over the USA.

We held our FIRST Osteopetrosis Symposium on October 20, 2013. We had over 30 ATTENDEES, both patients and families!

We met together to share personal experiences as well as to learn from Dr. Paul Orchard (who has transplanted many with OP) Dr. Lynda Polgreen (Pediatric Endocrinologist from Minnesota who works with Dr. Paul Orchard), and Dr. Eric Rush (Geneticist from the University of Nebraska).

The Mason Shaffer Foundation appreciates the support of Vidara Therapeutics who sponsored this wonderful event.

Vidara Therapeutics has recently merged with Horizon Pharma.

To learn more about Horizon visit www.horizonpharma.com.

We had a wonderful slideshow put together by Lori Davis…Please see what amazing people we have in our community:

Slideshow

You are able to see and share MIOP stories with RareConnect:

Here are updates and links to the families we share:

Rylee Mae Walden: www.facebook.com/rylee.walden

Isabelle Boulerice: http://mmeboulerice.com/superisa/?p=207

Adele Genrty: www.facebook.com/groups/635975413124410/

Hallie Janes: www.facebook.com/halliesjourney

Eric DeWaele:

Avery and River Simpson Deig: summer.simpsondeig@facebook.com

Kelptyn Jack: www.thehoneygrahams.weebly.com

Camille De Saedeleer: Stephanie.george.94@facebook.com

Anthony Dones: http://www.caringbridge.org/ny/anthony/

Nate Zimmerman: http://www.caringbridge.org/fl/nate

Joseph Kurt Parthenais: www.caringbridge.org/visit/josephparthenais

Brenna Clark: http://www.caringbridge.org/visit/brennagabrielle

Lilly Belle Kulungian: Love for Lilly Belle

http://www.facebook.com/groups/77155229242/?ref=ts#!/video/video.php?v=1210198425405

Ryan Wersten: http://www.curemiop.org/
http://www.caringbridge.org/visit/babyryan/journal/2/createdAt/asc

Joaquin Albornoz: http://www.caringbridge.org/visit/joaquinalbornoz

Maria Baltic: dinka.baltic@facebook.com

Eli Eckman: http://www.caringbridge.com/mn/eli

Facebook Page: http://www.facebook.com/messages/100001410876678#!/groups/18854866835/

Information contained on this Web site is not a substitute for a doctor's medical judgment or advice. The MSF recommends that you discuss your specific, individual health concerns with your doctor or health care professional. The materials and discussions presented here describe current treatment options and drugs or treatments that may be under study, and are for informational purposes only. Treatment options or donation procedures should be determined by an individual and his or her treating doctor based on the individual's overall health, age, disease, disease stage, and, if transplant is being considered as a treatment option, the availability of a suitably matched adult donor or umbilical cord blood unit. © 2010 The Mason Shaffer Foundation, Inc.