Welcome to the Huntington's Initiative. Together, we can do anything. Through the use of genetic modification therapy and CRISPR technology, the sky is the limit. If you are willing, we need help.
A little bit of context
My name is Antonio Maltese. I am 20 years old. After being hospitalized from a car accident on December 22, 2016, I was diagnosed with Huntington's disease through a genetic test and prelimnary function tests. My doctors at the University of Virginia and Johns Hopkins University wanted me to drop out of James Madison University and start looking for clinical trials or experimental drugs, but I am going to fight it in my own way, and if you are willing, I want you to be a part of it. I'm a fighter. If you know me, you know I'm stubborn. I'm going to fight for a cure or die trying. I started this blog and chuffed.org page 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 30,000 Americans) are affected by Huntington's Disease, the cure seems out of reach. Pharmaceutical companies, 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 disease and let everyone know, no matter how big nor how small, everyone has a story. Everyone deserves a fighting chance, even the 0.0001%.What is the problem?
Huntington's Disease is a neurodegenerative disorder that affects the brain. It breaks down into three different categories of affliction: cognitive, motor, and psychiatric.
When carrying the dominant Huntington gene, your offspring have a 50% chance of being afflicted by the disease as well. Each child is 50% at risk for developing the disease. Each like flipping a coin. Get tested.
In case you were wondering what a Huntington's test looks like, I've attached mine:
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, lack of awareness, depression, insomnia, fatigue and loss of energy, and many other debilitating symptoms.
My prognosis: death by age 45-early 50's with my CAG count at 43. (CAG count is a measure of how many mutant Huntington's DNA strands I have.)
-Mayo Clinic on Huntington's Disease:
http://www.mayoclinic.org/diseases-conditions/huntingtons-disease/basics/definition/con-20030685
"Silence is consent." Use your amazing voice for something Good; we're loudest together.
Why is America one of the very few countries NOT leading any gene therapy or research on genetic disorders? Why are some areas still illegal or controversial?
I wasn't too happy to find out I was going to have to go to another country to fight for a cure for Huntington's. I was disappointed I couldn't do it in my own country and that I have to travel abroad to propel an initiative for a cure.
-When will gene therapy come to the U.S.?https://www.technologyreview.com/s/519071/when-will-gene-therapy-come-to-the-us/
Another major problem is that so few companies have access to the newest technology and this is counterproductive. Editas Medicine and Monsanto, two of the very few companies to hold an international patent and usage rights on CRISPR technology and the revolutionary Cas9 viable cure technology, can only invest a limited amount of time, money, and inventiveness. Like the development of the Internet, medicine should encourage doctors worldwide to collaborate together, experiment on new technologies to improve them as only teamwork can accomplish. Cures should not be held back by the monopoly of a patent.
-Read over the patent submitted February 6, 2017:
http://www.crisprupdate.com/category/crispr-patents/
-Here is Editas Medicine's website:
http://www.editasmedicine.com/
What is the solution?
The solutions are multi-faceted and complex at best. There is a very new technology out there, performed in Switzerland, Germany, Oxford, Harvard and at a few other locations, called "CRISPR" genetic modification therapy. This technology needs further testing and much greater recognition of its potential.
-Monsanto will cure and modify our crops, what we eat, but not let us cure us?
https://www.statnews.com/2016/09/22/monsanto-licenses-crispr/
-Take a look at 'HDBuzz' on CRISPR and Gene Therapy:
http://en.hdbuzz.net/149
Dr. Nicole Déglon, a neuroscientist at the University of Lausanne in Switzerland, says "CRISPR's results are remarkably encouraging [and as] neurological diseases go, Huntington’s is an ideal candidate for CRISPR therapy, because the disease is determined by a single gene".
-Read this article about Dr. Nicole Déglon's first successful Huntington's gene-editing clinical trial in mice using CRISPR:
http://www.sciencemag.org/news/2015/10/gene-editing-method-halts-production-brain-destroying-proteins
Dr. Déglon was the first scientist to apply this technology on Huntington’s using mice. She had amazing results: a 90% blockage on disease production rate, using CRISPR-Cas9. This uplifts spirits and emanates hope.
I have been in contact with Déglon, Jong-Min Lee, and with some of these doctors and scientists, from around the world. We are trying to set up a game-plan, and will eventually need to meet face-to-face to initiate my Huntington's Initiative, backed by friends, family members, teachers, and doctors, all pursuing a cure. We radiate hope, believe in greatness, and envision a greater tomorrow.
I have found and been referred to a psychiatrist in Richmond, Virginia. His name is Dr. Adam Rosenblatt, he studied at Yale, worked at Johns Hopkins in the Huntington's unit, and now currently works in a HDSA designated center of excellence specializing in Huntington's disease. He is one of only about 5 world-renowned psychiatrists. Here, many of our questions can be answered.
A New avenue of hope, the Ionis trial: http://www.bbc.com/news/health-42308341Ionis
My first ever interview with geneticist Brianne Kirkpatrick disuccsing crispr, patient advocacy and more, can be viewed here: https://www.youtube.com/brianne interview
My first live broadcasted Podcast with radio show host and rising geneticist, Kira Dineen: https://www.youtube.com/watch?v=fLQBc2Nw_ag&feature=youtu.be/DNA Today Podcast
How do we implement this solution?
Nicole Déglon is part of the team. She said I'm "200% more than welcome to come visit" her laboratory in Switzerland, right near Friburg and talk further about exerpiments and research. We will be in touch again shortly.Mice are animals; humans are animals. We have the technology, we just need to employ it more effectively.
Well, this is the whole reason why I started this page. Déglon was the first scientist to attempt applying CRISPR gene modifying technology on Huntington's Disease. Not only do many believe this method and technology are going to lead to a Nobel Peace prize, but it is the road to the cure of many, if not all, genetic diseases.
What I will be doing and what donations will be used for:
I appreciate any support you can offer, but I did not create this page merely for monetary purposes. I want to raise awareness on a disease that cruelly takes so many lives mid-life. Donations to this project will allow me to travel to Germany, Switzerland, England, and perhaps to the Netherlands for 3-6 months, to meet and encourage doctors, scientists, patients and their advocates alike to focus on curing Huntington’s, in order to realize a healthy and genetic-disease-free future. Money donated will also go towards medical and transportation expenses not covered by insurance. But most importantly--let's raise awareness--let's save innocent lives--get tested--get cured.#stepup
-A New Era: http://harkeraquila.com/34561/science-and-technology/a-new-era-for-gene-editing/
How you can help:
-Donating, support, stay tuned. Patient advocacy and community based support is key.Donate here: https://chuffed.org/project/hope-for-huntingtons
-Promote and share these media and informational videos/Websites:
Interview with Brianne: https://www.youtube.com/Brianne Kirkpatrick
Interview with Kira: https://www.youtube.com/watch?v=fLQBc2Nw_ag&feature=youtu.be/DNA Today Podcast
Brianne's Webpage: http://www.watersheddna.com/Brianne Kirckpatrick
Kira Dineen's Podcasts: http://dnapodcast.com/Kira Dineen
The foreseeable future, achievable together.
CRISPR and gene silencing are the future. "Managing" symptoms is the past. It's time to dig deep to the core, it's time to cure the many afflicted by genetic and hereditary diseases, one DNA strand at a time, at our cruel roots. The world, our health, and the limitless information covered in our DNA is changing. Are you on board?
-America:
https://www.extremetech.com/extreme/233046-the-gene-therapy-revolution-is-coming-will-the-us-get-left-behind
