J. Antonetti's Page

NATIONAL ORGANIZATION FOR RARE DISORDERS, INC.

2015 Running for Rare Diseases Team!

Boston, Massachusetts

J. Antonetti's Page

Friends and Family,

I will be running a half marathon as part of Running For Rare Diseases, a program I've been involved with since 2008.  This year my running will take me to Providence as I will be with 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.  

This year I will be running on behalf of Will a boy from Pennsylvania representing the Homocystinuria (HCU) Community. Will's story can be found here - http://www.ivewillashot.org/.  Will's family has been involve with RFRD team for the last two years. Will's dad Chris will be joining us in Providence running the full marathon. 

The 102 members of the RFRD team are raising money and awareness for a very special program.  The teamin 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-deletiongne-myopathy (HIBM)Miyoshi Myopathy,  Addison's DiseaseGriselli Syndrome Type 1, Mucopolysaccharidoses Type 1 (MPS 1)Arterial Tortuosity Syndrome (ATS)Hereditary AngioedemaMultiple Sclerosis (MS), Atypical AbetalipoproteinemiaHereditary Diffuse Leukoencephalopathy with Spheroids (HDLS)Myelodysplastic syndromes (MDS)AutismHereditary Spastic Parapalegia (HSP)Neuronal Ceroid Lipofuscinosis (NCL) or Batten Disease - infantileAutoimmune polyendocrine syndrome type 1 (APS-1), HomocystnuriaN-glycanase (NGLY1) deficiencyBilateral Congenital CataractsHypoparathyroidismNiemann-Pick ACadasilHypothalamic Harmatomas (HH)Niemann-Pick BChronic Intestinal Pseudo Obstruction/Motility DisorderJackson-Weiss SyndromeParoxysmal Nocturnal HemoglobinuriaCongenital Central Hypoventilation Syndrome (CCHS)Juvenile Arthritis, PompeCongenital 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 CleftScleroderma,Erythemae MultifromaeLupusShwachman - DiamondFamilial HypocholesterolemiaMast Cell DiseaseStiff Persons Syndrome (SPS),Fibrodysplasia Ossficans Progressiva (FOP), MastocytosisTyrosinemiaFibromuscular DysplasiaMetachromatic Leukodystrophy (MLD),UndiagnosedFrontotemporal Dementias,  MicrothalmiaVanishing White Matter DiseaseGaucher DiseaseMitochondrial DiseaseVon Hippel-Lindau syndrome (VHL), Williams syndrome

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