Our Work

Our Approach

The goal of the End Huntington’s Disease Foundation is to eradicate Huntington’s Disease.  While we are optimistic that genetic therapies will be developed to help cure HD, at the moment, the only way to ensure the eradication of HD is through prevention.  

Our Solutions

Education:  Since HD is quite rare, educating people about HD is the first step toward eliminating the disease.  There are a variety of resources available to help with the education process. Below are some of our favorites.  You can find more information by following the resources link at the bottom of the page.

Genetic testing: To prevent HD, we need to know which at risk individuals carry the genetic mutation.  End HD will sponsor at-risk individuals that would like to get genetically tested for HD. We encourage that testing occur in a facility that includes conversations with professionals familiar with HD.  In theory, half of the individuals that will be tested will not carry the mutation and will not need any additional medical treatment related to HD.

PGD-IVF:  For those that are HD positive, End HD will sponsor the PGD-IVF process to completely eliminate HD from all children of the HD positive individual.  This process is not simple or inexpensive but is the only way to ensure the eradication of HD. Just think, if every at-risk individual used PGD-IVF, we could completely eliminate HD in one generation.  We think it will probably take more than one generation but that isn’t going to stop us from trying.

Pre-implantation Genetic Diagnosis (PGD) and In-vitro Fertilization (IVF)

Eggs are fertilized

8-cell Embryos are tested for Huntington’s Disease

Unaffected and affected embryos are separated

Unaffected embryos are transferred for IVF

Costs:

  • Costs vary by provider but we are able to negotiate better pricing because we are repeat customers that hope to purchase in bulk.
  • Costs also vary because some individuals have a tougher time with the IVF process.  It could take multiple attempts to be successful.
  • Genetic Testing
  • PGD
  • IVF
Procedure Cost Range
Genetic Counseling Varies
Genetic Testing $200 - $500
Preimplantation Genetic Diagnosis (PGD) $2,000 - $4,000
In Vitro Fertilization (IVF) $6,000 - $9,000
IVF Medications $5,000 - $8,000
Total PGD-IVF Range $13,000 - $25,000

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