I’m nearing my first anniversary as being the PMD Foundation’s Executive Director and I can tell you I love my job, it is my dream job. I won’t say that the job doesn’t have its struggles but we have an amazing board of directors that help support me in my role.
Read MoreKenny Jude Herndon was born August 4th 2008 with classic PMD (duplication in plp1.) He lives in Broken Arrow Oklahoma with parents Jennifer and James Herndon and siblings William, Jamie and Jocelyn. When Kenny was 6 months old, they noticed he wasn’t reaching milestones he should at his age, and his eyes would move from side to side (nystagnus).
Read MoreIn this issue: Devin Joseph, 3rd Annual Gabe VandenBerg Golf Outing, Research: Why We Do What We Do, Letter from the Chair, Fundraising, Events, Fun Halloween Costumes, Contact Information
Read MoreMy name is Francisco Oller, and I was born in San Juan, Puerto Rico. Although I came into this world without any complications, I developed nystagmus within two weeks. After a CT scan and MRI, I was immediately referred by my father’s uncle, Dr. Jose Luis Garcia Oller, to Dr. Neil Miller, a neurophtalmologist at Wilmer Eye Institute at The Johns Hopkins Hospital. At three months, my diagnosis was thought to be either congenital motor nystagmus or spasmus nutans. Later on, I developed head nodding, which did not cease until I was nine months old.
Read MoreCarson was diagnosed with PMD at 9 months of age after extensive testing. A failed hearing test at birth got the ball rolling and from there the first symptom to appear was nystagmus at around 4 months.
Read MoreThe Jones boys, Garrett, 16 and Gavin, 12, were diagnosed with Classic duplication PMD in 2001. Garrett was 3 and Gavin was not yet born. We (their parents, Gina and Gordon) made the decision to have Gavin partly because of the rarity of PMD. We felt that they would at least have each other as brothers and partners.
Read MoreAn inspirational speech by a young man, Cisco Oller, who battles Pelizaeus-Merzbacher Disease and is bringing down barriers with love, perseverance, and faith.
Read MoreYou make my life hard, really hard, and that is an understatement. But the one who you really make suffer the most is my innocent son, Nathan. He deserves a full life experience, but no, PMD, you robbed him of that. I really do hate you, and all of the pain you have caused me, my son and the rest of my family. The struggle has been real.
Read MorePMD is not a progressive, demyelinating disease. Human PMD studies can provide researchers with a longer timeframe to study specific patients. PMD research can potentially shorten the timeline towards a cure for all diseases of myelin, including Multiple Sclerosis.
Read MoreI held you in my arms a few minutes ago. I was contemplating the future and it is overwhelming. So I choose to exist here in this moment, and avoid visions of the impending scoliosis that your diagnosis, Pelizaeus-Merzbacher disease, dictates.
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