The Fox Focus 2024 Spring/Summer | Page 10

8 Fox Focus | Research

Managing Advanced Symptoms :

Quality-of-Life Improvements Are on the Horizon

By Kat Mehlhorn
MJFF ’ s Patient Council brings invaluable perspectives to conversations on PD treatments and managing symptoms day to day .
While available therapies for advanced Parkinson ’ s symptoms can treat some of the most bothersome symptoms , people with Parkinson ’ s disease urgently need better treatments to improve their quality of life , especially as the disease progresses .
Most often , people start drug therapy when symptoms interfere with their ability to do what they want or need to do . As the disease progresses , medication regimens often must be adjusted to address evolving non-motor and motor symptoms as well as any drug-associated complications . For individuals in the moderate to advancing years of the disease , this can lead to complex and sometimes hard-to-manage medication regimens .
The Michael J . Fox Foundation prioritizes programs aimed at improving treatment options and addressing patients ’ unmet needs . To understand those needs , we turn to the experts : people living with Parkinson ’ s . In 2023 , members of MJFF ’ s Patient Council participated in a focus group about the limitations of current medications and what better treatments could look like .
“ Levodopa works really well when it works , and then all of a sudden it goes off . It ’ s like someone turned off a switch ,” said one participant . Levodopa , the current “ gold standard ” treatment for Parkinson ’ s , may feel less beneficial over time . Dosages may fail to kick in , gradually wear off before the next dose is due , or stop working unexpectedly . Levodopa also can contribute to dyskinesia , which are uncontrolled , involuntary movements . “ There ’ s such a fine balance between symptoms you ’ re trying to treat and what medication can do to you as a side effect ,” said another respondent who has lived with PD for over 20 years .
To generate a robust pipeline of new treatments , MJFF works with academic researchers and drug companies to provide trial recruitment support , scientific data and resources , patient insights and direct funding . For example , since 2006 , the Foundation has granted a total of $ 2.28 million to biotech company Neuroderm , which has multiple programs to improve formulations of levodopa . As part of this total , MJFF supported studies of Neuroderm ’ s approach of a pump similar to the insulin pump used to treat diabetes , and trials