Photo credit: Michael J. Fox by Alan Light (flickr)
Michael J. Fox
Michael J. Fox, born as Michael Andrew Fox in 1961, is a Canadian-born actor, who received his breakthrough in Family Ties, an American sitcom. He consecutively received three Emmy awards as lead actor in this comedy series. He was the lead character in the adventure comedy film, Back to the Future.
When he was at the peak of success at the age of 30, he had a twitch in his finger for which he sought medical treatment. The following year, he was diagnosed with young-onset Parkinson’s disease, which is a neurodegenerative disorder. Parkinson's disease is characterized by involuntary body movements and tremors. In 1998, Fox publicly opened up about his condition and announced his commitment to Parkinson's campaign and research. He continued working as an actor and worked in The Michael J. Fox Show and The Good Wife.
Many factors determine the progression of the disease. Despite the difficulties in health, he has maintained his sense of humor and a positive outlook. He uses his public profile in making people aware of Parkinson's disease. He has dedicated his entire life to finding a cure for the disease. One effort is his Michael J. Fox Foundation, which aims to find a cure for Parkinson's disease through research funding.
The aim is to slow down or stop the progression of the disease and not to give up until a cure is found. The foundation has raised 450 million dollars to accelerate research efforts for Parkinson's disease.
The foundation has come up with a wearable sensor in the form of smartwatches, which can record continuous data. Another effort is the release of an app, which will help doctors study the effects of various medications. This app would enable the patients to record how they feel when taking medications, so that scientists can measure the effectiveness of the drugs. It will also help the doctors to accordingly prescribe medications. Although more research is yet to be carried out, the foundation believes that this research is still at its early stage. Intel ensured that data would be encrypted and anonymized to safeguard the privacy of the patient.
The symptoms of Parkinson’s disease include uncontrollable body movements, tremors, stiffness, lack of balance and coordination, loss of smell, slow movements, slurred speech, swallowing problems, and problems in intellectual functioning. About 5 million people worldwide are affected by Parkinson’s disease and not necessarily at their old age.
Role of Michael J. Fox
Fox is quite involved in the foundation. He and his wife are members of the foundation's Board of Directors. Fox is also the foundation's spokesperson and uses his gut sense and instinct to find strategies and focus. He works behind the scenes and has appointed people who are capable of giving their best for the organization to achieve its aim.
The foundation gets the people's participation by donating money or becoming a part of Team Fox. People in Team Fox organize events and the money collected is raised as research funds. Events such as golf tournaments, running marathons, and garage sales are held.
The foundation has funded around 40 million dollars in new grants alone. The focus of the project is a drug development pipeline to accelerate the discovery for a cure. The pipeline programs not only do academic research but also include the Therapeutic Development Initiative, which is a grant program. For preclinical therapeutic development, they give funds to industries.
Events held by the foundation include the annual gala, which is held in New York. It is an event with a mixture of comedy and music. Other events are organized in Los Angeles and Toronto. All of them are fundraiser events for the foundation.
Many therapeutic targets have progressed from clinical trials, which is the biggest success of the foundation. Biomarkers can measure the development of the disease. Such critical research tools, which are important for slowing down or stopping the disease have been supported by the foundation.
Supporters of the Foundation
The biggest supporters of the foundation are the Board of Directors. Many large organizations also support the foundation.
Along with focusing on research, the foundation also tries to bring industry experts and academic clinicians together. Basically, they are attempting to accomplish their goal by taking risks. A collaboration of many people is needed to make the charity successful. The efforts of people involved have an overall huge impact. The work done by the foundation has greatly influenced the efforts for the treatment of Parkinson’s disease over the years.
The foundation also funds researchers so they can access resources such as tissues of rodent models, human body donations, human body specimens, human postmortem tissues, and gain access to previous clinical data.
Michael J. Fox Foundation
With the help of an aggressively funded research agenda, The Michael J. Fox Foundation is dedicated to finding a cure for Parkinson’s disease. For those living with Parkinson’s disease, the foundation ensures the development of improved therapies.
The core values of the foundation are:
- 100 Percent Patient-Focused - Evaluates the risk, challenges, and opportunities with the help of a patient-focused lens. They work by speeding up the treatment process, so that it can reverse, slow down, or stop the progress of Parkinson’s disease. It is important to increase the speed of the treatment process to avoid drug side effects.
- Obsessed with Efficiency - The foundation is dedicated to finding a cure for Parkinson’s disease with a focused sense of optimistic urgency. Their aim is to not give up until a cure is found.
- Focused on the Cure - The foundation strives to find scientific solutions that could provide tangible improvements in the lives of patients living with Parkinson’s disease.
- Risk Takers and Problem Solvers - High-risk, high-rewards research have been funded by the foundation. This research has transformed the approach in the research field of Parkinson’s disease in ten short years.
- Different Model - Although it is common for external scientific advisers and boards to allocate donor-raised dollars, an in-house team of PhDs and project managers, who are business trained, are built-up for important decisions.
The Role and Impact of The Michael J. Fox Foundation
- Translating genetic findings into real treatments - The genetic studies done for Parkinson’s disease in over 15 years have revolutionized research. LRRK2, one of the most important genetic targets was discovered in the year 2004. Until present, they have invested around 57 million dollars. The foundation aims that as LRRK2 is relevant in the research journal. Similarly, it should be relevant in the doctor’s office too.
- Catalyzing new treatment based on enzyme activity - Alpha-synuclein accumulates due to the low activity of brain enzymes, which is the hallmark pathology of Parkinson’s disease. Amicus Therapeutics and Biogen Idec pharmaceutical company are working in a joint partnership. Their aim is to investigate whether the disease can be slowed or prevented by increasing the activity of the brain enzyme. The Michael J. Fox foundation initially funded Amicus, so that they could collect the data that was needed to enter into a joint partnership with Biogen.
- Sponsoring a landmark biomarker study - In the pursuit of a cure, forging the missing link is the aim of Parkinson’s progression markers initiative (PPMI). The foundation invested 55 million dollars for this project, which was launched in the year 2010. It has also contributed to researchers, government, academic, industry, pharmaceutical partners, and hundreds of patients and families. Today, for collaborative research, this study has become a new model.
- Improvement in therapeutic consistency - Medications for Parkinson’s disease is taken orally. They can help slow down the disease and cause an inconsistent absorption. Patients usually wait for the drug to take effect and they do not know how long the effect will last. The clinical testing of CVT-301 was funded by the foundation. An inhaled formulation of levodopa was developed for debilitating motor fluctuations, which is a symptom of Parkinson’s disease. This inhalation formulation could provide rapid relief.
- Better research tools - Free IP experimental tools such as reagents are created by the foundation itself. They share them with the research team free of charge, and in return, they ask for feedback about the tools. With the help of the MJFF, a catalog of low-cost high performing tools are made depending on feedback. The focus of researchers here is on the vision of curing Parkinson’s disease.
- Business and regulatory hurdles are dismantled in drug development - Business and regulatory hurdles that obstruct or slow down the development of new treatments are tackled by a problem-solving approach. The MJFF is trying to encourage the FDA that a roadmap should be defined to bring Parkinson's treatment to the market.
- Parkinson’s vaccine - The first vaccine for Parkinson’s disease was approached by the foundation along with the joint efforts of an Austrian biotech. A protein in the body of people with Parkinson’s disease clumps in the body cell. The first vaccine approach was done by producing antibodies against this protein by stimulating the immune system. The aim of this project was to clear these clumps to slow down the progression of Parkinson’s disease. The first stage of clinical testing has been reached by a 1.5-million-dollar investment by the foundation.
- Alpha-synuclein visualization in the living brain - In people with Parkinson’s disease, the alpha-synuclein forms clumps. These are the only definitive diagnosis of the disease found during an autopsy report. The foundation has funded this sophisticated brain imaging technique, so that the distribution of alpha-synuclein can be revealed in the living brain. This technique would positively affect the diagnosis of the disease along with the effective measurement of drugs for PD.
- Beyond dopamine - Jeff Conn of Vanderbilt University was awarded by the foundation for identifying mGluR4, which is a glutamate receptor. The foundation has awarded his team over 4 million dollars for showing that this specific glutamate receptor bypasses the dopamine system and causes functional improvements in Parkinson's symptoms. Based on Conn's work, Bristol-Myers Squibb, a pharmaceutical giant, signed up with the university to build up Conn’s work and develop drugs that could target this glutamate receptor.
- Helping dyskinesia researchers - To identify the best clinical scale for detecting dyskinesia, MJFF sponsored 1 million dollars for the study. Dyskinesia causes uncontrolled movements of the body, which can be a side effect of Parkinson's treatment. Earlier, researchers were making use of many different scales and it was becoming difficult to compare the results across trials. Clinical trials can be better concluded and designed by taking a single validated scale.
- Making an army of clinical trial volunteers - To develop a new drug, clinical trials are essential. Eighty-five percent of the trials fail due to delays and 30 percent fail due to the inability to find volunteers. The MJFF launched the Fox Trial Finder, which enables many patients and loved ones to participate in the trials and help in the quest for finding a cure for Parkinson's disease.
The Michael J. Fox Foundation is truly unique when it comes to its mission and structure. When it was publicly announced by Fox that he has Parkinson’s disease, he received outpouring support from the public. Due to this support, he wanted to do something for other people living with the disease.
In the year 2000, he started the research foundation for Parkinson’s disease. The aim of the foundation was to conduct research studies and find a cure. It was reported that the foundation invested 160 million dollars for Parkinson's research.