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 Ecuador, 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.
To learn more about Vidara visit www.vidararx.com.
We had a wonderful slideshow put together by Lori Davis…Please see what amazing people we have in our community:
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
Avery and River Simpson Deig: summer.simpsondeig@f
Kelptyn Jack: www.thehoneygrahams.weebly.com
Camille De Saedeleer: Stephanie.firstname.lastname@example.org
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
Joaquin Albornoz: http://www.caringbridge.org/visit/joaquinalbornoz
Maria Baltic: dinka.baltic@faceboo
Eli Eckman: http://www.caringbridge.com/mn/eli