" />

Welcome to our site

This site is a place for the people who love a child with a rare disease, disorder or illness… the child, parents, siblings, aunts, uncles, grandparents, guardians, cousins and beloved friends. I am the mother of a son with a rare pediatric disease, JORRP, and the last two years have been a journey for our family and loved ones. We have felt fear and triumph, desperation and hope. I have never felt more supported, or more isolated. I hope to use this website as a place to share information, support and stories. This website and community will grow through your contributions. So please, consider sharing information or a story or building a profile. Thank you. xo, nora

Aspiration

We aspire to provide support for people impacted by rare pediatric diseases by sharing stories, providing information, and building community.

Donate

If you have found this site to be helpful, please consider making a donation. Every dollar supports my work on this website or is applied directly to medical expenses.

About Mingle

Sign up for Mingle below and join the Rare Disease Support community. You can create a profile, post comments, make friends, send private emails and more!

Mingle Login

Login to connect with Others on Rare Disease Support:


Directory

Powered by Small Mingle Icon Mingle

Mingle Users

Powered by Small Mingle Icon Mingle

The connections between Education and Health

My son was diagnosed with a  rare disease two years ago.  He has had twenty surgeries, countless doctors appointments and has been robbed of his voice.  As a result I have willingly and aggressively plunged into the field of public health.  I sit in classes these days where the people are talking in a language that sounds [...]

Pitt Researchers Receive Patent for New Head and Neck Cancer Treatment

It seems that this article is saying that the new drug might treat JORRP and RRP.  What do you think?  Click here for the full article.

The new treatment is based on a form of genetic therapy called “antisense,” or AS, in which a synthesized strand of DNA or RNA targets the EGFR genes within a [...]

JORRP, Tracheomalacia and our latest adventure

Here’s and excerpt from an email that I sent Ayrie’s surgeon this Sunday morning:

I am not sure how Ayrie is doing. This Monday will be 4 weeks since the date of his last surgery.  This past week he has sounded as though he breathing is tight… I’m not sure how else to explain it.  It’s as though he isn’t quite getting the full volume of air [...]

A Sample Letter to a Representative

I have often been told by well meaning people to write a letter.  The letters are meant to serve different purposes and to address a variety of hurdles that I have encountered.  Letters to doctors, health insurance administrators, politicians, etc.  But to be honest, I have never felt comfortable taking their advice.  What would I [...]

An Interview with Dr. Marion, author of 'Genetic Rounds'

See larger image

Genetic Rounds: A Doctor’s Encounters in the Field that Revolutionized Medicine (Hardcover)
By (author) Robert Marion

List Price:
$24.95 USD

Used from:
$11.98 In Stock

I haven’t read the book yet, but I did listen to an interview with Dr. Marion on Minnesota Public Radio.  Dr. Marion is a pediatric geneticist and has the unenviable role of telling parents that their [...]

Tasmanian Devils’ cause of cancer discovered

Wired Magazine reports that scientists have discovered the true identity of a contagious form of cancer that is killing Tasmanian devils. The population has been devastated by this cancer and researchers were able to trace the source back twenty years to a single animal. It appears that the cancer cells are rouge cells [...]