Children with Chronic Recurrent Multifocal Osteomyelitis (CRMO)

Who is  Carey Redmond, and what is CRMO?

Carey is an 11 year old girl with Chronic Recurrent Multifocal Osteomyelitis (CRMO), a rare condition in which bones and joints are inflamed from lesions, causing pain.  Cutting-edge research indicates that it is an inherited auto-inflammatory condition, but the exact gene which causes it has not been found.  CRMO cycles between being dormant and active, and can erupt in bones in different areas of the body at any time (ankles, jaw, knees, ribs, etc).  Few adults get CRMO; most are children between the ages of 4 and 14.  Because it is a rare disease (1:1,000,000) little research is being done.  Treatments include medications generally prescribed for cancer and arthritis.  Some children get monthly treatments of medications given directly into the bloodstream through an IV.  Physical therapy is sometimes prescribed also, to help maintain or restore flexibility and movement.  When an outbreak occurs, children with CRMO are often in pain that is so debilitating that they cannot go to school; sometimes they cannot get out of bed.  The good news is that children with CRMO usually outgrow it and the outbreaks eventually pass, so that they can lead normal adult lives; the bad news is that until that happens, the children are subjected to outbreaks of pain in their bones and joints, which can lead to psychological pain when they cannot keep up with their friends at school.  Some children suffer from depression as a result.

What help is needed and what is being done?

  • A Support Network:   Jones of Jones the Series, a television sitcom, has organized an online support network for kids with CRMO worldwide to encourage one another and share experiences and ideas.  The network is at  Jones is getting the word out so that kids and families know about the network and can connect with one another.  This is being done through internet methods, and through public service announcements that will be run during the television sitcom Jones The Series on CBS21, as well as through other media.  Carey Redmond, spokes child for CRMO will also be featured as a character on the show.
  • Awareness for The Need for Research:  Jones is helping to spread the word about CRMO so that research can be done to identify the cause, alleviate the symptoms and find a cure.  New medications that are now being tried are currently not approved for use with CRMO, and therefore are usually not covered by insurance.  Researchers need to find effective medications that can be approved for use with CRMO.  Jones is asking other celebrities to make cameo appearances on the sitcom Jones The Series to show their support for kids with CRMO.
  • Financial Help for Carey Redmond, 11, spokes child for CRMO:  Jones is raising money to help Carey and her family pay for the expenses of new medications.  Carey gets monthly treatments at Hershey Medical Center, and much of Carey’s treatments are not covered by insurance.  Also, since Carey’s condition is worsened in colder months, Jones would like to treat Carey and her family to a week at Disney World this winter.  Lastly, Jones is seeking to give Carey a emotional boost by featuring her on Jones The Series, airing on CBS21 this fall.  Jones is donating a portion of all sponsorship monies received to Carey and to the cause of promoting awareness of CRMO.

How You Can Help:

  • Celebrities:  As a well-known actor, musician or sports figure, you can give 30 minutes of your time to make a cameo appearance on Jones The Series featuring Carey Redmond.
  • Business Owners:  As a business owner, you can help grow your business as well as help Carey and other children with CRMO by sponsoring Jones The Series.  Air your commercials on CBS21 during Jones The Series and take advantage of the benefits of TV as well as Web advertising on and on