The Parkinson’s Foundation study PD GENEration: Mapping the Future of Parkinson’s Disease provides genetic testing and counseling that empowers people with Parkinson’s disease (PD) to discover new insights about their genetic makeup and their family’s risks. Its valuable data also connects people to research. But what many may not realize is that PD GENEration is also here to drive research towards a cure.

Next-generation clinical trials for Parkinson’s disease are targeting the genetics underlying the disease. These trials require participants to carry known genetic mutations to test the safety and effectiveness of these new therapies or drugs.  Equipped with knowledge of their mutations, participants in PD GENEration can move science — and potentially a cure — forward by participating in trials that rely upon their unique genetic backgrounds.

How PD GENEration Helped Activate the ACTIVATE Trial

In 2023, the biopharmaceutical company BIAL began a clinical study, nicknamed “ACTIVATE,” of its promising new PD drug called BIA 28-6156. This drug was designed to restore the activity and function of a protein called GCase, which is impaired in people with Parkinson’s who have a mutation in the GBA1 gene. For that reason, the ACTIVATE study needed participants with PD and a confirmed GBA1 mutation.

“Finding enough patients with this mutation is a major challenge,” said Kathleen McKee, MD, MPH, Director of Movement Disorders at Intermountain Medical Center in Salt Lake City, UT. “If patients are not already identified through prior genetic testing, then you are looking at six months to a year to get all your patients through and test them, which is too slow for enrollment.”

Intermountain Medical Center was one of the healthcare sites that BIAL reached out to when it first began recruiting ACTIVATE study participants. Dr. McKee was tasked with finding which people with PD at their medical center had a GBA1 mutation and could be eligible for the study. 

This task was made much simpler as many members of the center’s PD community had already received genetic testing and counseling through PD GENEration. “We were able to look at a spreadsheet and instantly identify all our PD patients who had identified their GBA1 mutation through PD GENEration,” said Dr. McKee. 

With more than 24,000 people globally enrolled in PD GENEration and growing every month, this ease of finding eligible ACTIVATE study participants was likely accelerated for many other collaborating healthcare sites as well. 

In just under a year, the BIAL study met its recruitment goal of more than 230 people with PD and a GBA1 mutation, an impressive feat in no small part due to PD GENEration. With the study designed to monitor BIA 28-6156's effects over a year and a half for each participant, initial results from this study are expected to be released in mid-2026.

Beginning the Path to a Cure

PD affects people in different ways, largely because of the wide range of genetic mutations associated with disease. Through PD GENEration, people with PD can not only better understand their personal diagnoses but also use that knowledge to help support studies investigating treatments designed for their specific PD mutations.

“I’m excited for PD patients to participate in trials unique to their mutation. I think this is how we will start to discover the cure for PD,. We will discover the cure for one genetic mutation, it will help us learn more about the disease overall, and for patients with that mutation it will be life changing,” said Dr. McKee.

Learn More 

The Parkinson’s Foundation works to improve care for people with PD and advance research toward a cure. Learn more with these resources: 

• Discover how we are working to close gaps in knowledge about PD: Advancing Research

• Learn about and enroll in PD GENEration — a global genetics study that provides genetic testing and counseling at no cost for people with Parkinson’s.

• Explore ways to get involved in the Parkinson’s Foundation — from becoming a research advocate to joining a research study.

Preparing for extreme weather is a burden for anyone in the path of a storm or fire. People with Parkinson’s disease (PD) and their caregivers should take these tips into consideration to ensure that all PD-related needs are accounted for when preparing for a hurricane or any other natural disaster:

• Check all your medications. Take inventory of all medications and reorder any that are running low. 
• Write your medication list down. Write down or print a list of all your medications (not just PD medications). Include medication name, strength, times taken and dosages. This customizable medication schedule can help.
• Make a list of your doctors. Make a list of your doctors and their contact information and take it with you if you need to evacuate before a storm.
• Water and food preparedness. Medications may need to be taken with a meal and usually water. Calculate five gallons of water per person per day. Buy enough water and food to last three to five days.
• Order or print your Hospital Safety Guide in the event you need to educate an emergency responder or health care professional about your PD needs. Order one here.
• Have your Medical Alert Card handy. Keep it with you at all times. Print one here.
• Check in with your support network before and after. Arrange for at least one friend or family member to call you during a weather emergency, especially if you live alone.
• Practice anxiety reduction techniques. The stress of possibly losing power or being evacuated could make anyone anxious, but stress can worsen PD symptoms. Download a meditation or breathing app or try to distract yourself by reading a book.
• Know your nearest shelter. Visit the Red Cross website to find yours. Depending on where you live and your PD symptoms, you may qualify for a Medical Special Needs Shelter where you can get additional assistance with basic tasks. 

Preparing for power loss:

• Avoid overheating. If you lose air conditioning, monitor your body heat. Drink more than the recommended nine to 13 cups of water per day. Exercise in the early morning or late afternoon when cooler outside. Know the signs of heat stroke: flushed face, high body temperature, headache, nausea, rapid pulse, dizziness and confusion. If heatstroke is suspected, go to your nearest emergency room or urgent care for treatment.
• Address lightheadedness. Many people with Parkinson’s experience Neurogenic Orthostatic hypotension (nOH), characterized by a drop in blood pressure when going from a seated position or lying down to standing. Exposure to heat can make nOH worse. If you regularly or occasionally experience lightheadedness or dizziness when you stand up, take extra precaution if you lose power and air conditioning by staying hydrated and standing up slowly. 
• Prepare your devices. If you have a deep brain stimulator (DBS), make sure your patient controller is charged. If you use a DUOPA pump, plan ahead to keep your DUOPA cassettes refrigerated. Call your doctor to ask if you should have extra oral medication on hand in case you are unable to use your pump at any point. 

Preparing for an evacuation:

• Write and follow a packing list. Make sure to include all medications, water and snacks.
• Know your community response plan. Learn about your area’s response and evacuation plans before a storm hits. Find your state’s emergency management agency here.
• Take all your medications in their bottles with you. Try to keep them all in one travel bag.
• Take your walker, cane or wheelchair, even if you only use it occasionally.  
• Consider your devices. If you have a deep brain stimulator, remember to bring your patient controller. If your DBS neurostimulator is rechargeable, be sure that your recharger is fully charged and bring it along with the charging dock.

Download or order a Hospital Safety Guide today. Looking for more information about preparing for extreme weather with Parkinson's? Call our Helpline at 1-800-4PD-INFO (1-800-473-4636).