Collaborating a cure for Huntington's Disease
Collaborating a cure for Huntington's Disease
My name is Antonio Maltese and I am a student at James Madison University and Virginia Commonwealth University. I am 21 years old. After being hospitalized from a car accident on December 22, 2016, I was diagnosed with a predisposition to Huntington's disease through a genetic test and preliminary function tests. My doctor in Harrisonburg said before getting tested, "Even if you have it there isn't a damn thing you can do about it", but I’ve decided to fight Huntington's in my own way.
I started this petition to bring awareness to Huntington's Disease, not just for me, but for people like my dad, my grandma, and so many others—those who still hope and those who have lost all hope. Since so few people (around 200,000 Americans and others worldwide) are affected by Huntington's Disease, the cure seems out of reach. Pharmaceutical companies and research organizations, however, have never met Antonio Maltese. Mark my words: I'm going to do everything in my power to bring awareness to the first-ever genetically mapped neurodegenerative disease and let everyone know, no matter how big or how small, everyone has a story. Everyone deserves a fighting chance, even the 0.0001%.
Read my mission, how you can support this campaign further, how you can give back to the community, and many more details about research, which can be viewed here:
The main goal of this petition is three-fold. I wish to start a conversation about the legal and ethical barriers to gene editing/silencing and stem cell research, to explain and shed light on the wide range of applicable uses of gene editing/silencing such as CRISPR-cas9 and the Ionis clinical gene silencing trial for Huntington's Disease, and to facilitate a medium of exchange and collaboration between the organizations and political members of society tagged above.
I was selected to be James Madison University's Keynote speaker for the April 12, 2018 Conference on Global Issues: "Courage, the Most Honorable of Human Virtues", which can be viewed here:
If you’re willing, I want you to be a part of it. I'm a fighter. I'm stubborn, and I'm going to fight for a cure or die trying.
Huntington’s causes involuntary jerking or writhing movements, slow or abnormal eye movements, difficulty with speech or swallowing, difficulty organizing, prioritizing, or focusing on tasks, perseveration (the repetition and fixation of a response), lack of awareness, depression, insomnia, loss of bodily functions, fatigue and loss of energy, and many other debilitating symptoms. My prognosis: death by age 45 with my CAG genetic test repeat at 43. (CAG count is a measure of how many mutant Huntington's DNA strands I have.)
-Mayo Clinic on Huntington's Disease:
Remaining silent to drug companies and scientific academia regarding their main focuses and discussions is the equivalent to consenting to our current course of treatments and not allowing for change. Use your amazing voice for something good; we're loudest together.
-“Here’s the relevant bit of the budget: “(Sec. 749) Prohibits the FDA from acknowledging applications for an exemption for investigational use of a drug or biological product in research in which a human embryo is intentionally created or modified to include a heritable genetic modification.”
Those against genetic engineering or in vitro treatments have the privilege of being biased, because their life is not hanging in the balance of a genetically modified cure. This disallows for heritable traits to be added or retracted, no matter how deadly or concerning, regardless of how far technology advances.
There has also been lack of public support, and this greatly hinders any progress forwards, giving the government and pharmaceuticals no incentives to change direction. America has the resources and the opportunity to be a strong propellant towards this next necessary evolutionary leap.
Similar to the development of the Internet, medicine should encourage doctors, organizations, and researchers worldwide to collaborate together and experiment on new technologies to improve them, as only teamwork can accomplish. Cures should not be held back by the monopoly of a patented product and prevent it’s established use globally while hindering its full potential. The CRISPR gene editing technique, which can be used to solve world hunger, drought, specialized cancer treatments, anti-mold properties, and so much more, for instance, allows scientists to pinpoint an exact sequence of DNA within a gene, excise it using the Cas9 enzyme, and paste in a new segment of DNA in place of the original. We wish for organizations and their respective researchers to look at one another as collaborators rather than competitors. This is how a movement begins. This is how the world is changed. Together. Thank you, supporters.