Adult Onset Niemann Pick Type C

October is National Niemann Pick Disease Awareness Month

• Niemann-Pick Disease Type C in Adults by J. Imrie & J.E. Wraith
• Adult-Onset Niemann-Pick Type C Disease: A Clinical, Neuroimaging, and Molecular Genetic Study
• The Adult Form of Niemann-Pick Disease Type C by Marie Vanier (NNPDF Scientific Advisory Board Member)

Brad & Bart Mackie ~ Adult NPC

Brad (Adult-NPC) & Bart (Adult-NPC) Mackie with their cousin, Dana Wilson in the center

We were recently contacted by Lynn Lambright who wanted to share with the community this video of her son, Brad, with his loyal companion Dusty.

Both Brad (age 53) & his brother Bart (age 51) have adult on-set NPC.  Their mother, Lynne, commented on how they are both courageously dealing with the loss of most of their abilities, yet they have a daily drive to stay connected with family and friends.  

Adult onset NPC is still a new and undiscovered area for, not only the families who have a loved one diagnosed with NPC, but also for the various patient advocacy groups who offer support. This is an area that the NNPDF is working towards offering more services and support to our families and adults with late-onset NPC. 

Letters for Chad Mayo

Chad Mayo (Adult-NPC)

I know that many of you have had the opportunity to “meet” and work with Margaret Mayo over the years on behalf of her son, Chad.  She was a strong supporter of the NNPD foundation's list-serv. She not only looked to the list-serv and the NPD family community for support, but also offered support to so many families, “time-and-time” again, as to her experiences and journey with her beloved son, Chad.  Margaret has contacted the central office to advise that Chad has had a difficult couple of months fighting off a MRSA infection followed by aspiration pneumonia.  

He was first diagnosed with NPC at NIH in 1998 when he was 23 years old.  It has been a long 16 years for all involved and Chad has given an heroic fight, but is now quite ill and has gone home with “comfort care” through hospice.  His family has asked that the NPD family community do one last act of kindness on behalf of Chad. Please see their message below:

*October 10th, 2013* Family Request for Chad Mayo, NPC, age 39 years. 

Parents: Margaret and William of Pennsylvania ~ members of the NNPDF.

Dear friends and family.

My brother Chad Mayo is in the final stage of his fight with with Niemann- Pick Type C. I am asking that all those that have had the pleasure of knowing Chad lift him up in prayer. I would like to have Chad's final days filled with love and kind words letting him know that his life had such great meaning. If you would be so kind to take a minute and send a card or write a letter letting him know how his smile made you feel, we will be sharing all the notes, cards and letters with him as them come in.

Please Mail to:
1175 Muhlenberg Ave
Swarthmore, Pa 19081

Thank you in advance! The Mayo Family

Click this link to read Chad's Story