Friday, October 21, 2016

Rare Disease Foundations Need To Vote 4 Hope In Pepsi Refresh

September 1, 2010 by  
Filed under Videos

During the Vote4Hope Pepsi Refresh Rare Disease Campaign, I am making video postings on Addi and Cassi’s website to raise awareness for all rare diseases, not just the horrific disease called Niemann Pick Type C that I am fighting against on behalf of my six year old identical twins.

Please take a minute to watch this compelling rare disease video (if you found this posting, your rare disease might be in the video) and most of all VOTE everyday at Pepsi Refresh for the Global Genes Project to win $250K so we can continue efforts to help the entire rare disease community.  Join the Rare Disease team on Facebook.

Read why I am taking time the entire month of September to get the word out for all rare diseases and check out the  press release to learn more about the lack of treatments and cures for millions of people, including your rare disease.

In this video, there are people suffering from Congenital Central Hyperventilation Syndrome, Chromosome 6 Deficiency, Langerhans Cell Histiocytosis, Dandy Walker Syndrome, Citrullinemia, Krabbe Disease, Primary Immune Deficiency, Gaucher Type II, Patau Syndrome Mosaic or Trisomy 13, Haemangioma, Pallister Killian Syndrome or PKS, Erythropoietic protoporphyria, Spinal Muscular Atrophy Type 1, Spinal Muscular Atrophy Type 2, Recessive dystrophic epidermolysis bullosa, Bruguda Syndrome, NBIA Disorder.

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2 Responses to “Rare Disease Foundations Need To Vote 4 Hope In Pepsi Refresh”
  1. Great site you have here.. It’s difficult to find high-quality writing like yours these days.
    I really appreciate individuals like you! Take care!!

  2. oakley nz says:

    Thank you for your article, I feel that my life and find you how. Your blog is like a


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