Friends and Family,
For the 9th straignt year, I will be running a marathon as part of Running For Rare Diseases, a program I created back in 2008. This year my running will take me to Providence as I will be leading the expansion of RFRD into Providence on May 3, 2015 with a team of 80 runners. The Providence Marathon & Half Marathon take place just two weeks after the Boston Marthon where 23 runners will be representing RFRD. In total, the team has 103 runners. You may recall that last year I ran with the guidance of two angels; Wylder who lost his battle with Niemann Pick A at just 3 years of age and Mylee who was taken from us just prior to her sixth birthday by Mitochodrial Disease.
The 102 members of the RFRD team are raising money and awareness for a very special program. The team, in partnership with the National Organization for Rare Disorders (NORD), announced the creation of a fund to pay for standard diagnostic testing for people with mysterious, undiagnosed medical conditions. The fund will help those who have applied to the National Institutes of Health (NIH) Undiagnosed Diseases Program, but who cannot afford the basic medical tests needed to make them eligible to participate in the NIH program. NORD is a federally registered non-profit organization (TAX ID 13-3223946)
The 93 runner/patient partner teams are representing the following communities; all inspired to make a difference on behalf of the greater rare disease community:
9p-deletion, gne-myopathy (HIBM), Miyoshi Myopathy, Addison's Disease, Griselli Syndrome Type 1, Mucopolysaccharidoses Type 1 (MPS 1), Arterial Tortuosity Syndrome (ATS), Hereditary Angioedema, Multiple Sclerosis (MS), Atypical Abetalipoproteinemia, Hereditary Diffuse Leukoencephalopathy with Spheroids (HDLS), Myelodysplastic syndromes (MDS), Autism, Hereditary Spastic Parapalegia (HSP), Neuronal Ceroid Lipofuscinosis (NCL) or Batten Disease - infantile, Autoimmune polyendocrine syndrome type 1 (APS-1), Homocystnuria, N-glycanase (NGLY1) deficiency, Bilateral Congenital Cataracts, Hypoparathyroidism, Niemann-Pick A, Cadasil, Hypothalamic Harmatomas (HH), Niemann-Pick B, Chronic Intestinal Pseudo Obstruction/Motility Disorder, Jackson-Weiss Syndrome, Paroxysmal Nocturnal Hemoglobinuria, Congenital Central Hypoventilation Syndrome (CCHS), Juvenile Arthritis, Pompe, Congenital Hyperinsulinism (CHI), Klippel-Feil Syndrome (KFS), Prader Willi Syndrome (PWS), Cushing Syndrome, Langerhans Cell Histiocytosis (LCH),Rothmund Thomson Syndrome (RTS), Cyclic Vomiting Syndrome (CVS), Laryngeal Cleft, Scleroderma, Erythemae Multifromae, Lupus, Shwachman - Diamond, Familial Hypocholesterolemia, Mast Cell Disease, Stiff Persons Syndrome (SPS), Fibrodysplasia Ossficans Progressiva (FOP), Mastocytosis, Tyrosinemia, Fibromuscular Dysplasia, Metachromatic Leukodystrophy (MLD), Undiagnosed, Frontotemporal Dementias, Microthalmia, Vanishing White Matter Disease, Gaucher Disease, Mitochondrial Disease, Von Hippel-Lindau syndrome (VHL), Williams syndrome