Therapies are available to treat Parkinson’s symptoms and improve quality of life for people living with the disease. But we don’t yet have a way to slow or stop Parkinson’s progression, and that is why research is critical. Dr. Tanya Simuni of the Parkinson’s Foundation Center of Excellence at Northwestern University Feinberg School of Medicine says this is an exciting time for the development of Parkinson’s therapeutics. She explains the clinical trials process and describes some ongoing trials, including how the potential new drugs work and why it’s important for people with Parkinson’s to participate in research.

Released: October 24, 2017

The mission of the Parkinson’s Foundation is to improve the lives of people with Parkinson’s disease (PD). Since each person’s experience with PD is unique, a wide range of factors must be evaluated to learn what the most effective treatments are, who can best benefit from each treatment or intervention, and how to help caregivers. Thus, the groundbreaking Parkinson’s Outcomes Project was begun in 2009. Through this study, the Parkinson’s Foundation’s Centers of Excellence track and monitor their care of people with PD over time, from the newly-diagnosed to people who have been living with PD for 20 or more years to develop a comprehensive view of the disease and its impact on people’s lives. The results are shared with health professionals to promote the best possible care for all people with PD.

Released: July 3, 2018

Forty percent of people living with Parkinson’s disease (PD) are women, but compared to men, they have a longer time to diagnosis, less access to neurologist care, and are underrepresented in research studies. Although PD presents special considerations for women, they are, overall, treated the same as men. Some of the differences are body weight, drug metabolism, symptoms, monthly hormone cycles, hormonal changes across different stages of life, pregnancy, and family and other care giving responsibilities and occupational demands, all of which can affect their disease and its treatment. However, these special needs have largely been underrecognized and under-addressed by the medical profession.

Six women health care professionals, three of whom have PD, authored a paper titled “Unmet Needs of Women Living with Parkinson's Disease: Gaps and Controversies” to bring these issues to the fore, identify current knowledge, gaps, and possible strategies to meet the neglected needs of women with PD.

Some of these areas of need are management of the disease, psychosocial issues, advocacy, research on sex and gender issues, and participation of women in research studies. One of the authors is Annalien Oosterbaan, MD, PhD, who has Young-Onset Parkinson's disease and is an obstetrician/gynecologist, researcher at the Radboud University Medical Center in Nijmegen, The Netherlands, and a mother, and whom we spoke with for this podcast. She said the paper lays out a path forward for medical professionals to recognize the unique needs of women with PD and for women to become educated and empowered to communicate their symptoms and needs, participate in research, and to organize as a community.

Released: June 14, 2022

La participación de hispanos en estudios genéticos es necesaria para mejorar el entendimiento de la enfermedad del Parkinson. También aseguraría que los datos de los hispanos estén representados y que esos resultados se tomen en cuenta para iniciativas de salud en caso exista diferencia entre poblaciones. Sin embargo, vemos un porcentaje muy bajo de representación de esta comunidad, debido a varias razones como la falta de información sobre cómo funcionan los estudios y acceso a los hospitales por falta de seguro médico, por ejemplo.

En este episodio, hablamos con el doctor Ignacio Mata, doctor en neurogenética e investigador principal en el departamento de genómica medica en la Cleveland Clinic sobre el siguiente paso en la representación de hispanos en las pruebas genéticas: cómo participar.

Este episodio es el cuarto y final de nuestra serie con el doctor Mata, en la que cubrimos los temas de la genética, la importancia de las pruebas genéticas y la representación hispana en la comunidad de Parkinson.

Lanzado: 7 de julio de 2020

Diversifying genetic data can help accelerate the pace of Parkinson’s disease research and get us closer to finding a cure. In our latest Neuro Talk, Parkinson's Foundation Associate Vice President of Research Programs Anna Naito, PhD, shares early results from PD GENEration: Mapping The Future of Parkinson’s Disease. Dr. Naito also highlights what the Parkinson’s Foundation is doing to reach new populations and to increase diversity in genetics research.

La participación de hispanos en estudios genéticos es necesaria para mejorar el entendimiento de la enfermedad del Parkinson. También aseguraría que los datos de los hispanos estén representados y que esos resultados se tomen en cuenta para iniciativas de salud en caso exista diferencia entre poblaciones. Sin embargo, vemos un porcentaje muy bajo de representación de esta comunidad, debido a varias razones como la falta de información sobre cómo funcionan los estudios y acceso a los hospitales por falta de seguro médico, por ejemplo.

En este episodio, hablamos con el doctor Ignacio Mata, doctor en neurogenética e investigador principal en el departamento de genómica medica en la Cleveland Clinic sobre la importancia de la representación de hispanos en estas pruebas genéticas y la necesidad de educar tanto a hispanos en la comunidad de Parkinson como a los neurólogos sobre esta necesidad de representación para mejorar el entendimiento de la enfermedad.

Este episodio es el tercero en una serie de cuatro episodios con el doctor Mata, en las que cubrimos los temas de la genética, la importancia de las pruebas genéticas y la representación hispana en la comunidad de Parkinson.

Lanzado: 26 de mayo de 2020

Para entender el rol que juega la genética en la enfermedad de Parkinson, primero hay que entender de que consiste la genética y como la comunidad hispana puede participar en el avance de la investigación a través de las pruebas genéticas.

En este episodio, hablamos con el doctor Ignacio Mata, doctor en neurogenética e investigador principal en el departamento de genómica medica en la Cleveland Clinic sobre la significancia de las pruebas genéticas y de las iniciativas PDGENEration y el Parkinson’s Outcomes Project de la Parkinson’s Foundation.

Este episodio es el segundo en una serie de cuatro episodios con el doctor Mata, en las que cubrimos los temas de la genética, la importancia de las pruebas genéticas y la representación hispana en la comunidad de Parkinson.

Lanzado: 28 de abril de 2020

Para entender el rol que juega la genética en la enfermedad de Parkinson, primero hay que entender de que consiste la genética y como la comunidad hispana puede participar en el avance de la investigación a través de las pruebas genéticas.

En este episodio, hablamos con el doctor Ignacio Mata, doctor en neurogenética e investigador principal en el departamento de genómica medica en la Cleveland Clinic. Este episodio es el primero en una serie de cuatro episodios con el doctor Mata, en las que cubrimos los temas de la genética, la importancia de las pruebas genéticas y la representación hispana en la comunidad de Parkinson.

Lanzado: 31 de marzo de 2020

There is a great shortage of brain tissue for the study of many neurodegenerative disorders, including Parkinson’s disease (PD). Donations give researchers an opportunity to better understand these neurodegenerative disorders and provide insights on improving treatments and medications.

When is the right time to volunteer to donate?
Deciding to be a brain donor can be difficult. It often helps to seek guidance from loved ones. Talk with your family about your intent to donate, make a living will and tell your doctor your wishes. It is important to enroll with an organization in advance. Some brain banks will not accept a donation unless they already know the person’s wishes and have medical records, and this can take time. Forms will need to be filled out by you or the attending physician.

What is the process after end of life?
A family member or primary care physician will need to call the chosen organization’s 24-hour telephone number to notify them of the passing. This must take place immediately. Some organizations require brain donations to take place within 12 hours of time of death, while some allow donations within 24 hours. Make sure you know the policy of your chosen organization in advance to avoid any delays.

Frequently Asked Questions

Does donating brain tissue delay funeral arrangements?
Brain donation will not delay funeral arrangements and an open casket viewing is still possible.

Do I have to pay to donate?
Most organizations assume financial responsibility for transporting the brain tissue to a pathologist. Funeral expenses still need to be covered by the family.

Can anyone donate?
There are two reasons a brain may not be accepted: if the person passed away from a certain infectious disease or if the person was on a respirator prior to death.

As an organ donor, isn’t my brain included?
Brain donation is not included if you are an organ donor. You need to sign up for brain donation separately.

Can I change my mind?
Brain donation is a personal choice. You may opt out at any time by notifying the organization you signed up with.

Which organizations accept brain tissue?
Call the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (473-4636) for a list of organizations that accept brain tissue. The National Institutes of Health NeuroBioBank (www.neurobiobank.nih.gov) collaborates with six brain banks who collect tissue and then allow scientists to request samples to support their research. Donate to the NeuroBioBank by signing up with the Brain Donor Project: www.braindonorproject.org.

In this podcast episode, we ‘Meet the Researcher’, featuring a prominent investigator who has received support from the Parkinson's Foundation. We illustrate how a research career develops, what motivates people to study what they do, and to give some insight into what support from the Parkinson’s Foundation can accomplish in understanding the disease better and finding solutions.

In this episode, Dr. William Dauer, Director of the Brain Institute at the University of Texas Southwestern Medical Center in Dallas, describes his career path and how he came to be interested in movement disorders and in dystonia in particular, a condition in which muscles contract involuntarily, causing repetitive or twisting movements. He has long been involved in basic science research as well as in clinical practice, and what he has found in each area he has been able to apply to the other.

Released: December 28, 2021