CurePSP https://www.psp.org Unlocking the Screts of Brain Disease Fri, 17 Nov 2023 19:53:01 +0000 en-US hourly 1 https://wordpress.org/?v=5.8.2 https://www.psp.org/wp-content/uploads/2016/04/cropped-favicon-32x32.png CurePSP https://www.psp.org 32 32 PSP Care Partner Quoted in New York Times Article on Caregiving https://www.psp.org/psp-care-partner-quoted-in-new-york-times-article-on-caregiving/ Fri, 17 Nov 2023 19:53:01 +0000 https://www.psp.org/?p=15181 A PSP care partner talked about her experience in a recent New York Times article titled “The Quiet Rage of Caregivers.” Jennifer Levine, whose father had PSP, talked about the range of emotions felt by care partners which can be difficult to share.  “A lot of caregivers are afraid to express their anger, because they …

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A PSP care partner talked about her experience in a recent New York Times article titled “The Quiet Rage of Caregivers.” Jennifer Levine, whose father had PSP, talked about the range of emotions felt by care partners which can be difficult to share. 

“A lot of caregivers are afraid to express their anger, because they feel guilty,” Levine said

Caring for someone with PSP or a different neurological or medical condition can take an emotional toll, in addition to physical and financial ones. The article describes “The Centers for Disease Control and Prevention, which calls caregivers the ‘backbone’ of long-term home care in the United States, has warned that caregivers face many risks – anxiety and depression, chronic health conditions and financial strain, to name just a few. Yet experts said many caregivers feel they cannot speak openly about their frustration and anger.”

It can be immensely helpful to recognize and name the variety of emotions that can arise over the caregiving journey, including anger, in order to normalize, understand and cope with them. It is equally important to reach out for help, through asking friends and family to step in, exploring professional care services, finding time away from the caregiving role or working with a mental health therapist. For Levine, she found solace and support from her peers after starting a Facebook group for millennial caregivers.

CurePSP is grateful for Levine’s courage in telling her story and the NY Times’ role in spreading awareness about PSP and the value, challenges and needs of family care partners. We encourage you to read the article here and to connect with other care partners in our community here

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CurePSP Presents Two Scientific Posters at 2023 International Movement Disorders Society Congress https://www.psp.org/curepsp-presents-two-scientific-posters-at-2023-international-movement-disorders-society-congress/ Thu, 12 Oct 2023 14:44:09 +0000 https://www.psp.org/?p=14994 By Jessica Shurer, Director of Clinical Affairs and Advocacy at CurePSP More than 5,000 neurology professionals from 105 countries attended the Movement 2023 International Movement Disorder Society (MDS) meeting. Movement disorders specialist neurologists, allied health clinicians, non-profit organizations, industry partners and patient advocates gathered, in greater numbers than ever, for the annual gathering. This August, …

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By Jessica Shurer, Director of Clinical Affairs and Advocacy at CurePSP

More than 5,000 neurology professionals from 105 countries attended the Movement 2023 International Movement Disorder Society (MDS) meeting. Movement disorders specialist neurologists, allied health clinicians, non-profit organizations, industry partners and patient advocates gathered, in greater numbers than ever, for the annual gathering. This August, MDS was held in Copenhagen, Denmark. For attendees it is a valuable chance to learn scientific and clinical developments in the field and, perhaps even more importantly, connect with colleagues who share a common goal: improving care and treatments for those living with Parkinson’s disease, atypical Parkinsonian syndromes, Huntington’s disease, dystonia and other movement disorders. 

Kristophe Diaz, CurePSP’s Executive Director and Chief Science Officer, and Jessica Shurer, Director of Clinical Affairs and Advocacy, represented CurePSP at MDS this year.  

“Throughout the year, several team members at CurePSP travel to attend the leading international meetings and conferences including MDS,” said Diaz. “These gatherings are unique and critical opportunities to advocate for what matters most to patients and families living with PSP, CBD and MSA. It’s also the most efficient method to make sure we let people know, including those starting their career in neuroscience and neurology, what we do, the work we fund and the network we create and support. 

Diaz and Shurer attended sessions on palliative care (which included a presentation by Dr. Jori Fleisher, director of the CurePSP Center of Care at Rush University), the multidisciplinary management of freezing of gait, and many others. The session “From basic science to the clinic: Atypical Parkinsonism (PSP, CBD, MSA)” was attended by several thousand people. A surprising and exciting moment for Diaz and Shurer came when speaker Dr. Marina Picillo, neurologist in Italy, promoted the resources offered by CurePSP. She even went as far as to include the CurePSP logo and an example of a CurePSP social media post in two of her slides and particularly highlighted the CurePSP Centers of Care program. 

CurePSP also had two scientific posters at the 2023 MDS. In the poster titled “Determinants of care partner burden in atypical parkinsonian syndromes, Shurer and Dr. Miriam Sklerov of UNC Chapel Hill shared the results of a multi-center, retrospective study that found that female gender (of patients and care partners) and the PSP diagnosis (especially compared to the MSA diagnosis) were predictive of higher sense of care partner burden. Shurer and Dr. Michiko Bruno of Queen’s Health System co-presented “Identifying a path to improve diagnostic delay and access to care for PSP, CBS, and MSA,” on behalf of six medical centers, which outlined the importance of reducing clinic appointment waiting times and educating general neurologists. These abstracts can be read here.  

“These two posters demonstrated the momentum of collaboration across the CurePSP Centers of Care network,” said Shurer. “Our presentations fostered great conversations with attendees around the needs of people with PSP, CBD or MSA, and how we, as a neurology community, must work together to improve our care delivery.” 

Jessica Shurer alongside Dr. Michiko Bruno of the CurePSP Center of Care at Queen’s Health System in Hawaii

Additionally, Shurer enjoyed connecting with colleagues from the Parkinson’s Foundation, with whom CurePSP has built a partnership around professional medical education programming. In the days leading up to MDS, Diaz joined 260 neurogeneticists and researchers working to solve the genetics of Parkinson’s, PSP, CBD, MSA and related diseases. CurePSP also hosted a small dinner during MDS with available team members of CurePSP Centers of Care, which served as a special opportunity to continue to build relationships across the network and brainstorm research and outreach efforts at CurePSP, while enjoying a delicious Danish meal.  

The team is already looking forward to MDS in Philadelphia, PA in fall 2024, where they plan to have a CurePSP exhibitor table and make sure they showcase the growing impact of their work.

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CurePSP Recognizes Three Prominent Medical Institutions for Their Care for PSP, CBD and MSA https://www.psp.org/curepsp-recognizes-three-prominent-medical-institutions-for-their-care-for-psp-cbd-and-msa/ Thu, 05 Oct 2023 13:17:13 +0000 https://www.psp.org/?p=15014 NEW YORK (October 5, 2023) /PRNewswire/ — CurePSP has announced the designation of three new CurePSP Centers of Care, bringing the total to 33 centers across the United States and Canada. Vanderbilt University, Baylor College of Medicine and the University of Miami are now part of a network of specialized medical centers that aims to …

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NEW YORK (October 5, 2023) /PRNewswire/ — CurePSP has announced the designation of three new CurePSP Centers of Care, bringing the total to 33 centers across the United States and Canada. Vanderbilt University, Baylor College of Medicine and the University of Miami are now part of a network of specialized medical centers that aims to enhance access to early diagnosis, comprehensive care and support, and clinical research for progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) and multiple system atrophy (MSA).  

PSP, CBD and MSA, which are considered “atypical parkinsonian syndromes,” often go underrecognized and underdiagnosed. Symptoms can progress rapidly, especially compared to the more common and well-known Parkinson’s disease, and include significant imbalance, vision trouble, uncoordinated movements and changes to swallowing. Additionally, autonomic dysfunction (e.g., blood pressure regulation, urinary control) is a hallmark feature of MSA, while PSP and CBD can present with cognitive impairment and difficulty expressing words. Medications, therapies and lifestyle modifications are utilized to manage symptoms and decrease safety risks, although there are no disease-modifying treatments at present.

“Building community and collaboration is critical for patients, families and healthcare professionals alike,” said Jessica Shurer, MSW, LCSW, director of clinical affairs and advocacy at CurePSP. “The continued growth of our care network is one impactful way we can work toward improving the standard of care for PSP, CBD and MSA.”

Dr. Ihtsham Haq, professor of neurology and co-director of the CurePSP Center of Care at the University of Miami, described his “delight” in joining a network committed to the delivery of interdisciplinary care and to finding a cure for these rare, neurodegenerative diseases.

“The Parkinson’s Disease Center and Movement Disorders Clinic at Baylor College of Medicine has long been recognized as one of the world’s leading clinical and research institutions for Parkinson’s disease and other movement disorders,” said Dr. Chi-Ying (Roy) Lin, assistant professor of neurology. “We look forward to working with peer centers to promote research efforts, diagnostic accuracy and level of awareness of the atypical parkinsonian disorders as well as education for the next generation of neurology professionals.”

For Dr. Amy Brown, assistant professor of neurology at Vanderbilt University, it is their specialty autonomics clinic, array of clinical trials and multidisciplinary team of movement disorders and cognitive neurologists, neuropsychologists, speech-language pathologists, genetic counselors, social workers and nurses that allow them to be well-equipped to meet the needs of people diagnosed with PSP, CBD or MSA.

“Through becoming a CurePSP Center of Care, our ability to care for our patients will only expand and strengthen,” Dr. Brown said.

About CurePSP Centers of Care:

The CurePSP Centers of Care program was established in 2017 with the mission to enhance access to accurate and early diagnosis, high-quality and state-of-the-art clinical care and comprehensive support for PSP, CBD and MSA; serve as regional leaders and resources for those affected by PSP, CBD and MSA and healthcare professionals; increase awareness of PSP, CBD and MSA among patients, families, healthcare professionals, policymakers and local and larger communities; and promote collaboration within the network to optimize standards of care delivery for PSP, CBD and MSA and to create opportunities for multi-center research initiatives. Centers must re-apply every three years based on established designation criteria. There are currently 31 designated centers in the United States and two in Canada, and CurePSP aims to continue expanding the network in the coming years. For a complete listing of CurePSP Centers of Care, visit https://info.curepsp.org/centers-of-care 

About CurePSP:

Founded in 1990, CurePSP is the leading nonprofit organization dedicated to the awareness, care and cure for three neurodegenerative diseases: progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) and multiple system atrophy (MSA). As a catalyst for new treatments and a cure, we establish important partnerships and fund critical research. Through our advocacy and support efforts, we enhance education, care delivery and quality of life for people living with PSP, CBD and MSA and their families. The voices of those we serve guide our priorities, and science, community and hope are at the heart of CurePSP’s mission and all of our services. CurePSP is a registered 501(c)(3) charity within the United States (Federal Employer ID Number: 52-1704978). Our work is possible thanks to the generosity and support of those in our community and beyond.

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CurePSP Awards Latest Pathway and Pipeline Grants and Urso Student Fellowship Grants Looking to Take Advantage of Recent Neuroscience Breakthroughs https://www.psp.org/curepsp-awards-latest-pathway-and-pipeline-grants-and-urso-student-fellowship-grants-looking-to-take-advantage-of-recent-neuroscience-breakthroughs/ Thu, 28 Sep 2023 15:05:48 +0000 https://www.psp.org/?p=14978 Studies seek to establish an early-stage blood biomarker, explore novel therapies and support the creation of a cohort of PSP and CBD patients in Argentina. NEW YORK, Sept. 28, 2023 /PRNewswire/ — CurePSP has awarded its latest Pathway and Pipeline Grants and Urso Student Fellowships, totaling over $422,000. Recipients of the grants are: Dr. Kurt Farrell, assistant professor at …

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Studies seek to establish an early-stage blood biomarker, explore novel therapies and support the creation of a cohort of PSP and CBD patients in Argentina.

NEW YORKSept. 28, 2023 /PRNewswire/ — CurePSP has awarded its latest Pathway and Pipeline Grants and Urso Student Fellowships, totaling over $422,000. Recipients of the grants are: Dr. Kurt Farrell, assistant professor at the Icahn School of Medicine at Mount Sinai; Dr. Blas Couto, researcher at the Institute of Translational and Cognitive Neuroscience (INCyT) in Buenos Aires; Dr. Luana Fioriti, head of laboratory at the Mario Negri Institute for Pharmacological Research in Milan, alongside Dr. Carmela Tartaglia, associate professor at the University of Toronto and clinician at the Rossy PSP Centre; and Dr. Joseph B. Rayman, assistant professor of medical sciences at Columbia University Irving Medical Center. Recipients of the Urso Student Fellowship Grants are: Hania Qamar (mentor: Dr. Naomi Visanji), a graduate student at the University of TorontoHasnat Nuri (mentor: Dr. Stewart Clark), an undergraduate student at SUNY at Buffalo; and Soyeon Park (mentor: Dr. Jonathan Lin), an undergraduate student at Stanford University. The studies will make progress in identifying biomarkers, studying pathways for therapeutics and creating a new database of patients in Argentina.

The latest Pathway grants will fund two projects: “Understanding the Roles of Risk Loci Implicated in Genome-Wide Association Studies of PSP” by Dr. Kurt Farrell, and “Epidemiology and Tau Biology in a Longitudinal Cohort of Argentinian Patients with PSP and CBD” by Dr. Blas Couto. Dr. Farrell’s project will use data from a previous genetic analysis to identify specific genes and biological mechanisms that cause PSP. Dr. Couto will study a group of Argentinian patients with CBD and PSP to develop a research-ready biobank and database.

The newest Pipeline grants will fund “Potential Therapeutic Biomarkers for Progressive Supranuclear Palsy” by Dr. Luana Fioriti and Dr. Carmela Tartaglia, and “Development of Small Molecule Inhibitors of Tau Oligomerization” by Dr. Joseph B. Rayman. Dr. Fioriti and Dr. Tartaglia are investigating a specific type of post-translational modification of tau that could lead to a novel PSP-specific early-stage blood biomarker. Dr. Rayman’s work will continue the development of a small molecule that, via its interaction with TIA1 protein, could prevent the pathological oligomerization of the tau protein, therefore opening the way to new therapeutic approaches for tauopathies including PSP, CBD and Alzheimer’s disease.

Dr. Jennifer Brummet, associate director of scientific affairs and partnerships at CurePSP, hopes that these projects will lead to progress in high-priority research areas.

“Together, these grants will help advance our understanding of the fundamental neurobiology of PSP and CBD while also investigating potential biomarkers and therapeutics,” Dr. Brummet said. “There is a critical need for biomarkers to help ensure accurate diagnosis of PSP and CBD and for therapeutics to help treat or cure PSP and CBD, and these grants will help move the needle on these goals.”

The newest Urso Student Fellowship grants were awarded to students conducting projects that focus on the complex barriers facing research of PSP and CBD.

“Progressive Supranuclear Palsy: A Disease-Specific Mouse Tauopathy Model” by Hania Qamar (mentor: Dr. Naomi Visanji) recognizes the lack of an animal model as a barrier to understanding PSP and aims to generate a mouse model that would be the closest replica of how PSP presents itself in the human brain. “Investigation of the Role of Non-cholinergic PPTg Neurons in a Model of PSP” by Hasnat Nuri (mentor: Dr. Stewart Clark) seeks to further develop a mouse model of PSP by administering the tau protein in the brain region known as the pedunculopontine tegmentum (PPTg) to investigate the effects of abnormal tau accumulating in this region. “Testing Anti-Tau Properties of Integrated Stress Response Boosters In Vivo” by Soyeon Park (mentor: Dr. Jonathan Lin) will study the effects of injecting mice with Integrated Stress Response (ISR) boosters to see if cell death and tau levels are reduced. The opportunities afforded by these grants will help foster the next generation of researchers dedicated to furthering our understanding of PSP, CBD and related diseases, while contributing essential information to the field.

About CurePSP’s Research Grants 

Pathway and Pipeline Grants provide seed funding to support innovative projects focused on the fundamental neurobiology and mechanisms of tauopathies (“Pathway”), and translational projects focusing on new therapeutics and biomarkers for tauopathies (“Pipeline”). The Urso Student Fellowship supports students conducting summer research projects focused on PSP, CBD and related diseases with a goal of encouraging students at all post-secondary levels to pursue research in the field. The next deadline for Pathway and Pipeline Grant applications is October 31, 2023. The next deadline for Urso Student Fellowship Grants is January 31, 2024, and applications will open this fall. Learn more about our research grants here. Grant applications will be submitted to ProposalCentral and can be found here.

About CurePSP

CurePSP is the leading nonprofit organization dedicated to the awareness, care and cure for three neurodegenerative diseases: progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) and multiple system atrophy (MSA). As a catalyst for new treatments and a cure, CurePSP establishes important partnerships and funds critical research internationally. Through its advocacy and support efforts, CurePSP enhances education, care delivery and quality of life for people living with PSP, CBD and MSA and their families. Science, community and hope are at the heart of CurePSP’s mission and all its services. CurePSP is a registered 501(c)(3) charity within the United States (EIN: 52-1704978). For more information, please visit www.curepsp.org.

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Now Hiring: Associate Director of Clinical Affairs and Advocacy https://www.psp.org/now-hiring-associate-director-of-clinical-affairs-and-advocacy/ Tue, 26 Sep 2023 19:06:24 +0000 https://www.psp.org/?p=14969 CurePSP seeks an Associate Director of Clinical Affairs and Advocacy to work as part of the Patient & Care Partner Advocacy Team, reporting to the Director of Clinical Affairs and Advocacy. This team primarily focuses on CurePSP’s care and consciousness pillars and oversees programs and strategies that include direct interaction and support of people affected …

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CurePSP seeks an Associate Director of Clinical Affairs and Advocacy to work as part of the Patient & Care Partner Advocacy Team, reporting to the Director of Clinical Affairs and Advocacy. This team primarily focuses on CurePSP’s care and consciousness pillars and oversees programs and strategies that include direct interaction and support of people affected by PSP, CBD and MSA. This includes a network of 33 Centers of Care across the U.S. and Canada; the Quality of Life Respite Grant; printed and digital collections of informational resources; online and regional support groups; family conferences; bereavement support; educational programs for community members and healthcare professionals; engagement with volunteers; brain donation assistance; and raising awareness among the general community, healthcare providers and policy makers. These initiatives aim to lead to earlier diagnosis, assessment and addressing of unmet needs, better outreach and support for historically underrepresented communities and improved access to high quality and patient-centered clinical care and resources for people with PSP, CBD and MSA. This key role presents the opportunity to work alongside, and on behalf of, diagnosed individuals, family care partners, medical professionals and other stakeholders to achieve these efforts. The Patient & Care Partner Advocacy Team closely partners with the Marketing Team, Events Team, Executive Director, foundational/volunteer committees and other organizations to carry out responsibilities and priorities.

How to apply:

Please send resume/CV and cover letter to:

Jessica Shurer, MSW, LCSW, Director of Clinical Affairs and Advocacy, at shurer@curepsp.org

Full Job Description

 

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Parkinson’s Foundation and CurePSP Announce Partnership for Launch of Special Programming for Healthcare Professionals https://www.psp.org/parkinsons-foundation-and-curepsp-announce-partnership-for-launch-of-special-programming-for-healthcare-professionals/ Thu, 21 Sep 2023 13:03:55 +0000 https://www.psp.org/?p=14915 NEW YORK & MIAMI (September 21, 2023) /PRNewswire/ — The Parkinson’s Foundation today announced the launch of a partnership with CurePSP on the development of a multi-part educational program geared towards healthcare professionals. The program focuses on “atypical Parkinsonian syndromes,” including: progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) and multiple system atrophy (MSA). “As a leader in professional medical …

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NEW YORK & MIAMI (September 21, 2023) /PRNewswire/ — The Parkinson’s Foundation today announced the launch of a partnership with CurePSP on the development of a multi-part educational program geared towards healthcare professionals. The program focuses on “atypical Parkinsonian syndromes,” including: progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) and multiple system atrophy (MSA).

“As a leader in professional medical education in the Parkinson’s space, our partnership with CurePSP allows us to expand our efforts to an area with more limited training opportunities and resources,” said Elizabeth Pollard, Vice President and Chief Training and Education Officer for the Parkinson’s Foundation. “We want to help physicians, nurses, rehabilitation therapists, social workers and other healthcare professionals to better understand distinct needs and care considerations with atypical Parkinsonism.”

PSP, CBD and MSA are rare, life-limiting, neurodegenerative diseases with no current disease-modifying treatments. Symptoms often progress quickly, especially compared to Parkinson’s disease (PD), and include significant imbalance, socially-isolating communication changes, autonomic dysfunction, and swallowing and vision difficulty. It takes an average of 2.5 years from the start of symptoms to arrive at a clinical diagnosis of PSP, CBD or MSA and over half of people are initially diagnosed with PD. The two organizations aim to address these gaps.

“When given a diagnosis of PSP, CBD or MSA, patients and families face a loss of the specialized clinical care and resources widely available to the PD community and, unfortunately, commonly find themselves in the challenging position of educating their healthcare team on their disease,” said Jessica Shurer, Director of Clinical Affairs and Advocacy for CurePSP. “Serving similar communities and with parallel missions, we are excited to build upon PF’s robust medical education offerings and collaboratively approach the improvement of quality of care and of life of this community.”

The “Atypical Parkinsonism Program” includes an accredited three-part podcast series (launched); an online course (launching in 2024); and an in-person Advanced Team Training (launching in 2024) offered to Team Training alumni.

Healthcare professionals can access this new accredited podcast on the Learning Lab. For more information on PSP, CBD and MSA, visit Parkinson.org/Parkinsonisms and Curepsp.org/iwanttolearn.

About the Parkinson’s Foundation 

The Parkinson’s Foundation makes life better for people with Parkinson’s disease by improving care and advancing research toward a cure. In everything we do, we build on the energy, experience and passion of our global Parkinson’s community. Since 1957, the Parkinson’s Foundation has invested more than $425 million in Parkinson’s research and clinical care. Connect with us on Parkinson.org, Facebook, Twitter, Instagram or call 1-800-4PD-INFO (1-800-473-4636).

About CurePSP

CurePSP is the leading nonprofit organization dedicated to the awareness, care and cure for three neurodegenerative diseases: progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) and multiple system atrophy (MSA). As a catalyst for new treatments and a cure, we establish important partnerships and funds critical research internationally. Through our advocacy and support efforts, we enhance education, care delivery and quality of life for people living with PSP, CBD and MSA and their families. Science, community and hope are at the heart of our mission and all our services. CurePSP is a registered 501(c)(3) charity within the United States (EIN: 52-1704978). For more information, please visit www.curepsp.org.

About Parkinson’s Disease 

Affecting an estimated one million Americans, Parkinson’s disease is the second-most common neurodegenerative disease after Alzheimer’s and is the 14th-leading cause of death in the U.S. It is associated with a progressive loss of motor control (e.g., shaking or tremor at rest and lack of facial expression), as well as non-motor symptoms (e.g., depression and anxiety). There is no cure for Parkinson’s and nearly 90,000 new cases are diagnosed each year in the U.S.

About Atypical Parkinsonism

PSP, CBD and MSA are caused by the progressive loss of brain cells over time primarily due to the abnormal folding and accumulation of proteins. Considered “atypical Parkinsonian syndromes” due to overlap with motor symptoms of the more common Parkinson’s disease, arriving at the correct diagnosis of PSP, CBD or MSA can be a lengthy and confusing process for patients, families and healthcare professionals alike. Symptoms are complex and carry high risk of complications. The average life expectancy for all three diseases is 8 years from symptom onset. It is estimated that up to 12 individuals per 100,000 people are living with PSP, CBD or MSA, although the prevalence may be higher due to the frequency of misdiagnosis with other neurological conditions. While the progression of the diseases cannot be slowed at this time, there are medications, rehabilitation therapies and lifestyle modifications available to manage symptoms. Awareness and education are critical to enhancing access to diagnosis and care.

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Congresswoman Jennifer Wexton announces Progressive Supranuclear Palsy (PSP) diagnosis https://www.psp.org/congresswoman-jennifer-wexton/ Mon, 18 Sep 2023 12:10:40 +0000 https://www.psp.org/?p=14907 Today, Congresswoman Wexton announced she has been diagnosed with Progressive Supranuclear Palsy (PSP). This comes after previously sharing that she had been diagnosed with Parkinson’s disease in April 2023. As stated on her House of Representatives website, Rep. Jennifer Wexton has been serving the people of Northern Virginia for nearly two decades, first as a …

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Congresswoman Jennifer Wexton (source: https://wexton.house.gov)

Today, Congresswoman Wexton announced she has been diagnosed with Progressive Supranuclear Palsy (PSP). This comes after previously sharing that she had been diagnosed with Parkinson’s disease in April 2023.

As stated on her House of Representatives website, Rep. Jennifer Wexton has been serving the people of Northern Virginia for nearly two decades, first as a prosecutor, then as an advocate for abused children, followed by her role as a state Senator, and now as a member of the U.S. House of Representatives from Virginia’s 10th District.

In April 2023, Congresswoman Jennifer Wexton made a powerful announcement, pledging to raise awareness and take action on World Parkinson’s Day. She stated, “I chose to come forward today, on World Parkinson’s Day, because I want to bring about as much good from this diagnosis as I can, and I look forward to doing just that here in Congress,” (source).

Like Rep. Wexton, many PSP patients initially receive a Parkinson’s disease misdiagnosis in part due to limited awareness among the public and healthcare providers, leading to delays in obtaining an accurate diagnosis. The sooner a person living with PSP puts in place a care team the better. Importantly, the lack of awareness and the delay in diagnosis also hinder clinical trials.

On behalf of our community, including patients, caregivers, and those who have lost loved ones to PSP and rare neurodegenerative disorders, CurePSP commends Congresswoman Jennifer Wexton for publicly sharing her PSP diagnosis. We appreciate her commitment to raising awareness and amplifying the voices of our community. CurePSP, with its network of experts and advocates, stands ready to assist.

“When I shared with the world my diagnosis of Parkinson’s Disease a few months ago, I knew that the road ahead would have its challenges, and I’ve worked hard to navigate those challenges through consistent treatments and therapies. But I wasn’t making the progress to manage my symptoms that I had hoped, and I noticed the women in my Parkinson’s support group weren’t having the same experience that I was. I sought out additional medical opinions and testing, and my doctors modified my diagnosis to Progressive Supra-nuclear Palsy – a kind of ‘Parkinson’s on steroids.’

“I’ve always believed that honesty is the most important value in public service, so I want to be honest with you now – this new diagnosis is a tough one. There is no ‘getting better’ with PSP. I’ll continue treatment options to manage my symptoms, but they don’t work as well with my condition as they do for Parkinson’s.

“I’m heartbroken to have to give up something I have loved after so many years of serving my community. But taking into consideration the prognosis for my health over the coming years, I have made the decision not to seek reelection once my term is complete and instead spend my valued time with Andrew, our boys, and my friends and loved ones.

“When I made the decision to run for Congress, this was clearly not the way I anticipated it coming to a close — but then again, pretty much nothing about my time serving here has quite been typical or as expected. I will forever cherish the people from our communities and all around the country I’ve come to know, the challenges we’ve faced together, and the ways both big and small that my team and I have made a difference in the lives of our neighbors. While my time in Congress will soon come to a close, I’m just as confident and committed as ever to keep up the work that got me into this fight in the first place for my remaining time in office – to help build the future we want for our children. I am truly humbled by the trust Virginians have placed in me, and I look forward to continuing to serve the people of our district.”

 

To view Congresswoman Jennifer Wexton’s full statement from today, click here.

To learn more about PSP, please visit: https://www.psp.org/psp-some-answers-resource/

To learn more about CurePSP Centers of Care, please visit: https://info.curepsp.org/centers-of-care

To read the related Washington Post article, please visit https://www.washingtonpost.com/dc-md-va/2023/09/18/jennifer-wexton-parkinsons-diagnosis-progressive-supranuclear-palsy/

 

If you have any questions about this article or CurePSP, please contact Dr. Kristophe Diaz at diaz@curepsp.org or 646-725-1453.

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CurePSP to Sponsor and Exhibit at INPCS23 With an Eye Towards Strengthening Palliative Care Network https://www.psp.org/curepsp-to-sponsor-and-exhibit-at-inpcs23-with-an-eye-towards-strengthening-palliative-care-network/ Wed, 06 Sep 2023 14:53:19 +0000 https://www.psp.org/?p=14887 The International Neuropalliative Care Society (INPCS) will be hosting its third annual professional symposium September 12-15. The event, taking place in Minneapolis, Minnesota, will be attended by hundreds of neurology professionals and will feature speakers on creative approaches to neuropalliative care and updates on the state of the field, clinical rounds discussions, networking opportunities, scientific …

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The International Neuropalliative Care Society (INPCS) will be hosting its third annual professional symposium September 12-15. The event, taking place in Minneapolis, Minnesota, will be attended by hundreds of neurology professionals and will feature speakers on creative approaches to neuropalliative care and updates on the state of the field, clinical rounds discussions, networking opportunities, scientific poster presentations and more. Additionally, Brian Wallach, a former assistant U.S. attorney who once worked for Barack Obama, will be presented with the award for advocate of the year for his legislative advocacy efforts around amyotrophic lateral sclerosis (ALS). 

CurePSP is proud to be a sponsor of the event, titled “INPCS23: Coming Together to Transform Care,” and Jessica Shurer, Director of Clinical Affairs and Advocacy at CurePSP, is one of the featured speakers. INPCS aligns with CurePSP’s mission, as they are at the forefront of recognizing and meeting the shifting needs of patients with neurologic illness and those around them. Palliative care is an interdisciplinary model of care delivery focused on the relief of suffering and enhancement of quality of life for those with serious or chronic illness. Neuropalliative care has emerged in the last decade as a field of medicine applying palliative care to those with a neurological diagnosis. INPCS hopes to build a neuropalliative care community, and CurePSP welcomes the opportunity to be a part of this circle, sharing resources to best serve patients and their families 

Shurer views an integrated and holistic approach to care, with the patient and their family at the center of the care team, as the optimal way to decrease the impact of disability and support a sense of dignity over the disease course. Shurer has tracked INPC’s growth and efforts since attending their first conference, a virtual one in 2020, and immediately felt drawn to their goals to build community, education and advocacy around neuropalliative care. She will be speaking on the Disease Society Panel along with representatives from the Parkinson’s Foundation, Lewy Body Dementia Association, ALS Association and other non-profit organizations.  

It is important to further strengthen our partnerships with like-minded organizations and healthcare providers involved with INPCS and to ensure that the unique needs of people with PSP, CBD and MSA are represented in the neuropalliative space. I proposed that CurePSP become a sponsor of the 2023 INPCS conference and threw my hat into the ring as a presenter,” Shurer said. “I will be discussing initiatives CurePSP is leading to promote palliative care with PSP, CBD and MSA and how we try to balance addressing the realities of living with one of these diagnoses with sharing messages of hope.”  

CurePSP has steadily increased the number of CurePSP Centers of Care around the United States and Canada, one of the strongest palliative care resources CurePSP has to offer given the collaboration within the medical network to improve the standard of care and understand best practices in the specialized treatment of PSP, CBD and MSA. CurePSP views INPCS as another ally in the field that is prioritizing the well-being of patients and their families. 

CurePSP will have an exhibitor table at the 2023 meeting and Shurer looks forward to engaging with attendees to learn about their work in the field and to share information on PSP, CBD and MSA. 

Learn more about INPCS here 

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For Kathy Cieslak, the CurePSP Quality of Life Respite Grant Provided a Caregiving Companion When She Needed One Most https://www.psp.org/for-kathy-cieslak-the-curepsp-quality-of-life-respite-grant-provided-a-caregiving-companion-when-she-needed-one-most/ Thu, 17 Aug 2023 14:33:29 +0000 https://www.psp.org/?p=14785 Kathy Cieslak and her husband, Jim, suspected something was wrong after he suffered the first of several falls while working at UPS. When he was diagnosed with progressive supranuclear palsy (PSP) and frontotemporal dementia (FTD) in 2021, they didn’t know where to start, but Kathy did all she could to maintain a sense of normalcy …

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Kathy Cieslak and her husband, Jim, suspected something was wrong after he suffered the first of several falls while working at UPS. When he was diagnosed with progressive supranuclear palsy (PSP) and frontotemporal dementia (FTD) in 2021, they didn’t know where to start, but Kathy did all she could to maintain a sense of normalcy in their lives. Jim was enrolled in physical, occupational and speech therapies, which helped maintain his quality of life, but the progressive mobility and incontinence issues of PSP-FTD were taxing. 

“It was a struggle because we couldn’t predict the future. I was working with an elder care lawyer to see if I could get him on Medicaid,” Kathy said. “I was wondering, ‘What are we going to do? How is this going to pan out? Is he going to go into the advanced stages of this disease? Is he going to fall and get hurt? I really had to be proactive to figure out what would come next and consider the financial implications.”  

Kathy remodeled their home to accommodate Jim, turning their dining room into a bedroom with a new walk-in shower nearby. She took him to daycare from 7:00 in the morning until 3:00pm, where he would then come home for physical therapy. It was not easy, but Kathy showed up every day for Jim, who was always loving and appreciative of her efforts. Kathy then needed to have hip replacement surgery, leaving her in rehab for a month. It became difficult to take care of Jim and herself. 

When Joanna Teters, Manager of Support Programs at CurePSP, called Kathy on November 1, 2022, she had goosebumps. She had been awarded a Quality of Life Grant, which she says could not have come at a better time. Utilizing the grant, she was able to hire a professional caregiver to come in from 6:00pm to 10:00pm to fill in a gap after physical therapy. She felt grateful for the time this afforded to her to recharge.  

“I had no clue if I was going to get a grant or not,” Kathy said. “But I thought, why not, I’ll just fill out the forms and see what happens and lo and behold, it was the right thing at the right time.”  

The isolating nature of the diseases put immense strain on Kathy, and she felt perhaps most grateful for the simple gift of company. The unpredictable issues that were overwhelming to solve by herself became easier with a companion, providing Kathy with the relief of two extra hands and someone who she says felt like family.  

“The falls were frustrating for him and frustrating for me, and [the caregiver] helped me through all of that,” Kathy said. “It allowed me to relax a little bit and know that at that least I had someone else here to keep an eye on Jim.”  

Jim passed away on April 8, 2023, at age 69, after sharing 45 years of marriage with Kathy. She felt fortunate that they got to travel extensively together before his diagnosis. Jim loved the mountains and fishing, and once in Montana they saw a beautiful halo rainbow around the sun. Kathy cherished the sight that seemingly came out of nowhere. Even after his diagnosis, they attended adaptive golfing and fishing events so Jim could still enjoy some of his favorite activities. 

These diseases can change everything in the blink of an eye. With Jim this came out of nowhere,” Kathy said. “I was so grateful to the Quality of Life Grant program and glad that they’re continuing it this year.”  

On the day that Jim passed, Kathy stepped outside to feed the fish at their local fish hatchery. When she looked up at the sun she saw the same halo that she saw with Jim in Montana. She felt a weight lifted off her heart, relieved to know that in the end everything would be okay. 

 

Click here to donate to the Quality of Life Respite Grant to provide relief to families in need. Apply to the Quality of Life Respite Grant here 

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CurePSP Awards Latest Urso Student Fellowship Grants https://www.psp.org/curepsp-awards-latest-urso-student-fellowship-grants/ Mon, 14 Aug 2023 14:24:41 +0000 https://www.psp.org/?p=14752 CurePSP has awarded its latest round of Urso Student Fellowship grants to students and trainees conducting projects considered pertinent and valuable to future research for progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) and related diseases. Supported by the Paul and Ruth Urso Memorial Research Fund, these projects may be in basic, translational, clinical or epidemiological …

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CurePSP has awarded its latest round of Urso Student Fellowship grants to students and trainees conducting projects considered pertinent and valuable to future research for progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) and related diseases. Supported by the Paul and Ruth Urso Memorial Research Fund, these projects may be in basic, translational, clinical or epidemiological aspects of PSP and CBD. The three recipients were all drawn to the complex barriers facing research of these diseases, and by working with experts they will be building on established findings to push the field forward. The opportunities afforded by these grants will help foster the next generation of researchers dedicated to furthering our understanding of PSP, CBD and related diseases, who are already contributing essential information.

Learn more about CurePSP’s Student Fellowships here.  

Progressive Supranuclear Palsy: a disease specific mouse tauopathy model 

Hania Qamar, a graduate student at the University of Toronto, recognizes the lack of an animal model as a barrier to understanding PSP and aims to generate a mouse model that would be the closest replica of how PSP presents itself in the human brain. 

“This is an important first step in the realm of PSP research,” Qamar said. “And it’s necessary to provide this platform to help test future disease-modifying therapeutics.”  

Receiving the grant feels special to Qamar because she has seen her uncle live with the neurological movement disorder dystonia for twenty years. She has seen the barriers that neurological disorders can cause and acknowledges the importance of quality of life for patients with rare diseases. Working with her mentor, Dr. Naomi Visanji, Qamar’s project will be the first to take human post-mortem material (including the tau protein) and inoculate transgenic mice in the same brain regions that are involved in early PSP in humans. There are three main cell pathologies characteristic of PSP that make it such a unique disease and Qamar’s model will attempt to display all three, which will be visualised using an immunohistochemical analysis (antigen test) of the mice brains. Once generated, this animal model will be a springboard for future studies with the potential to find new therapy targets and test prospective novel therapies according to Dr. Visanji.  

“If we light the fire in one brain region then we can look at the progression of the disease to other distant regions and study processes involved in the spread of the disease other than just the tau protein,” Dr. Visanji said.  

Adding to PSP’s complexity, the two note that the human brain expresses six versions of tau and these mice are the first to express all six versions. They credit the generosity of Drs. Gerard Schellenberg and Virginia Lee at the University of Pennsylvania for sharing these transgenic mice as gathering these resources can be a significant challenge to research. Following a close study of the mouse brains this summer, Qamar hopes to be able to report on the closest model of a PSP brain found in a lab today.  

Investigation of the role of non-cholinergic PPTg neurons in a model of PSP 

Hasnat Nuri, an undergraduate student at SUNY at Buffalo, seeks to further develop an animal model of PSP using mice by administering the tau protein in the brain region known as the pedunculopontine tegmentum (PPTg) to see the effects of abnormal tau accumulating in this region. The PPTg region is a cholinergic-rich area filled with neurons that PSP patients lack and seems to spread the disease to other parts of the brain. By better understanding the PPTg, Nuri hopes to help scientists develop treatments that could stop the spread of pathological tau out of the region. Nuri’s project will initiate the disease within the mice by expressing the tau protein in the PPTg region and then leting the mice age for fifteen months, a progressive model that should allow him to do a retrospective analysis of the disease process. He hopes that at the end of the fifteen months they will have an end-stage disease that they have been studying, which could allow them to identify a biomarker.  

“Having a better understanding of this region and the neurons within it can help everyone in finding a cure and early treatment,” Nuri said. “I hope our research can give everyone more information so that we can work collaboratively as scientists.”  

Nuri’s project takes mentor Dr. Stewart Clark’s initial findings a step further by not just removing neurons but making a living disease that progresses over time. The most attainable goal that the two see for the project is helping develop pharmaceuticals that maintain patients’ quality of life. The model would allow them to compare drugs like those made for Parkinson’s patients to see what would be most effective to help with issues like motor functioning. And if the tau aggregate produced ends up being PSP-like, then the two are cautiously optimistic of their chances to identify a biomarker of early disease 

“I would love to change the conversation to early PSP being five or ten years before we normally diagnose,” Dr. Clark said. “Even if we can get them two more years, that’s my hope for the biomarker.”  

Testing Anti-Tau Properties of Integrated Stress Response Boosters In Vivo 

Soyeon Park, an undergraduate student at Stanford University, will study the effects of injecting mice with Integrated Stress Response (ISR) boosters to see if cell death and tau levels are reduced, the potential first step of a PSP therapy. The Integrated Stress Response (ISR) is an important protein quality control mechanism in human cells, and people with weakened ISR are at increased risk for PSP and Alzheimer’s. The molecules identified by Dr. Lin’s lab boost ISR function and prevent tau build-up in cell culture models. Park’s project will inject these ISR-boosters into transgenic mice and hopes to see a reduction of cell death and tau levels. This could pave the way for future patient studies.  

Park developed an interest in neurodegenerative diseases in high school when her grandmother became a Parkinson’s patient. She studied various pathogenic mechanisms of Parkinson’s, leading to the realization that we are still ignorant of so many parts of the brain.  

“This obscurity is what attracted me to neuroscience,” Park said in her grant application. “Neuroscience research feels like discovering unexplored crevices no one has ever found before.” 

 

Learn more about CurePSP’s research grants here

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