For neurologists, each spring is marked by the American Academy of Neurology (AAN) annual conference. Neurology professionals from across the United States and beyond gathered at AAN, a multi-day meeting from April 22 to 27 in Boston, MA, to learn about clinical and scientific developments in the field. 

CurePSP hosted an exhibitor table at AAN as an important step in building connections across the larger neurology community, staffed by three members of the CurePSP team: Jessica Shurer, Director of Clinical Affairs and Advocacy, Sabrina Da Rocha, Director of Marketing and Communications, and Dr. Larry Golbe, Chief Clinical Officer and member of the Board of Directors. 

General neurologists, neurology residents, sub-specialized neurologists (e.g., movement disorders, cognition), neuropsychologists, medical students, allied health professionals, researchers, industry professionals and non-profit leaders are among the over 9,000 people who attend AAN each year. 

“As patients and families often explain to us, one of the most frustrating aspects of living with progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) or multiple system atrophy (MSA) is having a diagnosis that most healthcare providers have little to no familiarity with,” Shurer said. “In an effort to address this, we must build programs and partnerships towards education of the medical community about these diseases. AAN is a key opportunity to do that.” 

Attendees came up to the CurePSP exhibitor table to ask questions about symptoms, treatments and research for PSP, CBD and MSA as well as to gather information on CurePSP’s services. 

“The clinicians we spoke with were particularly excited to learn that they could order our printed educational materials for their clinics as they shared that they often do not know what resources to point their patients and families to after giving a diagnosis of PSP, CBD or MSA,” Da Rocha said. 

CurePSP staff were also able to take advantage of AAN’s extensive educational programming and showcase of the latest scientific advances in neurology.  

“The AAN meeting is the world’s leading clinical neurology conference each year. It’s the main place neurologists go to discuss research before it’s published and to hear about new things through the grapevine. I learned things that will help me to do my job at CurePSP better,” Dr. Golbe said. 

CurePSP staff also spent time networking with neurologists working as directors of CurePSP’s Centers of Care, colleagues from multiple sister non-profit organizations and representatives from pharmaceutical and biotechnology companies interested in PSP, CBD and MSA. Shurer felt encouraged by how many of the conversations were centered around possible collaborations and the needs of patients and hopes to continue that progress in the coming years. 

“We are already looking forward to representing CurePSP at AAN 2024 in Denver, CO.” 

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CurePSP’s Director of Clinical Affairs and Advocacy, Jessica Shurer, attended Rare Disease Week on Capitol Hill during the week of February 28 — March 2. She was joined by Julie Balasalle, CurePSP volunteer and social worker specializing in policy and lobbying. As Shurer shared, “this is just the beginning” for CurePSP’s involvement in larger scale advocacy.

Progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) and multiple system atrophy (MSA) count as three of 10,000 rare diseases, defined by the Orphan Drug Act as a medical condition that affects less than 200,000 people in the United States. Unlike over 70% of rare diseases, PSP, CBD and MSA are not identified as having a genetic cause, yet are among 95% without an FDA-approved treatment. Shurer learned that these are important messages to emphasize when talking to staffers and legislators about common challenges shared across the rare disease community.

“A top priority is to ensure that CurePSP is advocating alongside and on behalf of those we serve at every level,” Shurer said. “From empowering people to self-advocate to creating resources that are important for our community members to educating healthcare professionals on the diagnosis, care options and unique needs of PSP, CBD and MSA.”

Shurer also sees advocacy as a way for patients and families to use their lived experiences to shine a light on the lesser-known diseases and have a say in policy decisions that could impact them.

“We need to elevate the voices of our community at the highest level, as subject matter experts, to influence legislators,” Shurer said. “Health and care have the power to bring lawmakers of all political ideologies together.”

Shurer and Balasalle joined over 500 other advocates for a conference organized by the EveryLife Foundation. They heard panel discussions and deep-dives into four policy proposals that impact the rare disease community, such as asking legislators to join a Congressional sign-on letter requesting the formation of an internal FDA task force to review agency-wide rare disease activities. Other legislative asks included increasing rare disease appropriations at the FDA and NIH, cosponsoring the Better Empowerment Now to Enhance Framework and Improve Treatments (BENEFIT) Act (H.R 1092 and S. 526) and joining the Rare Disease Congressional Congress.

“The diagnostic odyssey that my family went through to get to a probable diagnosis of CBD for my mother was long, expensive, isolating and exhausting and this is a pervasive challenge across most rare diseases,” Balasalle said. “I believe that reality won’t change without legislative and grassroots advocacy. Policymakers need to hear our stories and start the journey of understanding what patients, care partners, healthcare professionals and researchers need in order to move towards better diagnostic tools, treatments and ultimately cures.”

Shurer and Balasalle met with the offices of 10 different Senators and representatives (of 300 congressional meetings with the rare disease community held that week), where they focused on asking them to cosponsor and move forward the National Plan to End Parkinson’s Act (formerly H.R 8585/S. 4851) once it is re-introduced. This bipartisan bill, a primary effort of the Unified Parkinson’s Advocacy Council led by the Michael J. Fox Foundation, would establish an advisory council to coordinate federal efforts and create a national plan to maximize investments in research toward treatments and a cure for the Parkinsonian diseases, including PSP, CBD and MSA.

CurePSP is currently defining a legislative agenda and building an advocacy toolkit, which will be available on www.curepsp.org and shared with the community. Among the tools will be guides for telling your story and effectively engaging policymakers.

“The combined annual cost of medical, direct and indirect expenses of rare diseases in the U.S. is over one trillion dollars. Not only did I underscore how this is a public health issue, I implored legislators to recognize that you don’t have to be personally impacted by a rare disease for this to be personal,” Shurer said. “I understand that change in politics and policies takes a long time. Still, we need to act. I am excited to see how the steps CurePSP are taking to increase our advocacy programming and efforts translate to legislation that will improve quality of life for PSP, CBD and MSA.”

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As you likely know, it is equally important to address the well-being of both the person diagnosed with a neurological diagnosis and their family care partner; building a support system is paramount to achieving that. Since 2016, over 150 families living with progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) or multiple system atrophy (MSA) have received financial support for professional in-home care through the CurePSP Quality of Life Respite Grant. These families determined their need for this care in their own time, taking into consideration factors unique to each of their lives.

When you live with or care for someone with PSP, CBD or MSA, adapting to new symptoms is a daily challenge. Care may be expensive and it can take time to find the right agency and people who can provide the support your changing needs require. To help ease this burden, CurePSP is honored to be able to offer grants for 60 hours of professional in-home respite care.

The CurePSP Quality of Life Respite Grant is possible because of the generous donations from our community members. This includes the Levien family, who created the Cherie Levien Quality of Life Legacy Fund to honor and remember their loved one who was diagnosed with PSP. Through your support, we can continue to strengthen and expand the reach of the respite grants. This will ensure the program’s long-term sustainability and our ability to provide this powerful, direct assistance to PSP, CBD and MSA families.

To date, CurePSP has provided over 8,000 hours of professional in-home care to people living with PSP, CBD or MSA in the United States. As manager of this grant program, I have been privileged to witness the powerful impact of the respite grants for our recipients. Kathleen A., whose husband was diagnosed with MSA, shared with me in April 2021, “As Chris’s primary care partner, this grant allowed me to bring in extra caregiving so I could go into the office, run errands, or just have a little time to myself.”

There are many family care partners like Kathleen whose quality of life and capacity to meet the needs of their loved ones depend on support from their care team, CurePSP and others in the PSP, CBD and MSA community.  

Please donate today to the CurePSP Quality of Life Respite Grant and help us to share the care.

Because Hope Matters, 

Joanna Teters 

Support Programs Manager 

CurePSP, Inc.

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Spain, who has served as a volunteer for CurePSP for several years, will be the inaugural director of development. In this role, he will work to build relationships with individuals affected by rare neurological diseases and ensure the long-term sustainability and growth of CurePSP’s mission and programs. Spain brings a wealth of experience to the role, having previously led successful fundraising efforts at the University of Virginia, Rice University and most recently, Virginia Commonwealth University. He holds a Bachelor of Science in Business Administration from East Carolina University and a Master of Education in Sport Leadership from VCU.

Brummet, a seasoned professional with extensive experience in the nonprofit sector, advocacy and science policy, will manage CurePSP’s grant programs, key partnerships and other initiatives relevant to CurePSP’s “Cure” pillar. Before joining CurePSP, she served as research manager at the American Epilepsy Society, where she supported early-career grant programs and research initiatives. She has also held positions at the Society for Neuroscience and the National Science Foundation. Brummet holds a PhD in neuroscience from Michigan State University and a BA in psychology from Illinois Wesleyan University. She is an auxiliary board member with the Chicago Council on Science and Technology (C2ST) and volunteers with the Health Research Alliance. Dr. Lawrence I. Golbe, board member and chair of the Scientific Advisory Board since CurePSP’s incorporation in 1990, looks forward to Brummet expediting scientific processes and in turn accelerating discovery.

“CurePSP is often approached by researchers, nonprofits and pharma companies with proposals for collaboration and support,” Dr. Golbe said. “Jennifer’s arrival will allow us to pursue additional opportunities more efficiently.”

Dr. Kristophe Diaz, executive director and chief science officer at CurePSP, sees the new additions as seamless fits to advancing CurePSP’s mission.

“The unwavering support of tens of thousands of donors, including those impacted by PSP, CBD and MSA, has fueled our recent growth,” Dr. Diaz said. “Their generosity has allowed us to further our mission of offering support, education and hope to those affected by incurable neurological diseases. We’re thrilled to welcome Rich and Jennifer to the team and anticipate their positive contributions in improving the lives of these families and advancing treatments and a cure.”

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).

Contact:

Dr. Kristophe Diaz

Executive Director and Chief Science Officer

646-725-1453

diaz@curepsp.org

The post CurePSP Strengthens Team with Director of Development and Associate Director of Scientific Affairs and Partnerships appeared first on CurePSP.

“I look forward to being a front door for the organization,” Rich said. “Being able to provide a personal connection during a trying time in people’s lives and connect them to relevant resources.”  

Rich first learned about development and donor relations as an undergraduate at East Carolina University, when he asked his cross country and track coach where his scholarship was coming from. He became curious in the field which led to over a decade of working at universities, starting at the University of Virginia Athletics Department before going to Rice University then Virginia Commonwealth University (VCU). At Rice he began by fundraising for student athletes but given the small size of the school, “the second smallest Division I school,” he soon found himself fundraising for the whole student body. It was while at Rice that he learned of his father’s PSP diagnosis. He then returned home to Richmond and VCU to lead a fundraising team responsible for securing support for every school and unit on both medical and main campuses. 

While taking care of his father, Rich sought information on PSP which led him to CurePSP. He reached out to then-Executive Director David Kemp, asking how he could use his fundraising skills to help the organization. Kemp sent him a list of central Virginia supporters who had given to CurePSP in the past, and Rich traveled around the region to meet them and learn about their journeys, relaying the information to his family so that they would know what to expect. Today, CurePSP offers Rich the opportunity to blend his personal and professional skills, connecting with people for a cause that truly matters to him.  

“This is it for me,” Rich said. “I’m very fortunate that I can do what I care about — helping with care, finding a cure and promoting research — day in and day out.”  

Rich begins his Director position with both of his parents in mind, emphasizing the importance of supporting not just patients but also care partners. He thinks back to all of the uncertainty surrounding his father’s battle, and remains dedicated to making CurePSP an accessible and personal resource so that no one feels alone in their journey. 

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The CurePSP grant was made possible by Carol’s Walk to Cure PSP, a 2022 community fundraising effort led by the New York-based Canter family to support Carol Canter who was diagnosed with PSP, a rare form of neurodegeneration that involves pathological accumulation of the tau protein in the brain.

The grant will accelerate a large biomarker and drug development effort supported by the Rainwater Charitable Foundation (RCF), a long-term partner of CurePSP. The recipients of the CurePSP grant are Dr. Neil Vasdev, director of the Azrieli Centre for Neuro-Radiochemistry, at CAMH, Toronto, Canada, and Dr. Chester Mathis, distinguished professor of radiology at the University of Pittsburgh. Within the coming years, these two world-class researchers and the team assisting them plan to deliver a positron emission tomography (PET) radiopharmaceutical and complete the first in-human tau PET imaging study in patients with PSP.

Dr. Kristophe Diaz, executive director and chief science officer for CurePSP, said, “The creation and validation of more objective biological measures and biomarkers in PSP, CBD and other neuropathologies are fundamental to the advancement of a therapy for those living with these fast-progressing and hard-to-diagnose neurodegenerative diseases.”

To date, there are no effective treatments for most neurodegenerative diseases. To advance useful solutions for families, scientists from academia and industry must create and validate fluid and neuroimaging biomarkers.

“CurePSP’s contribution to this effort gives me hope of real progress and also demonstrates the power and generosity of our community in catalyzing real advances for a cure,” said Rich Spain, CurePSP’s director of development.

Dr. Glenn A. Harris, director of business development and research partnerships and the drug discovery lead for the RCF, said, “We are thrilled to continue our partnership with CurePSP by supporting programs that have a high likelihood of improving patient outcomes. Drs. Vasdev and Mathis are world-class researchers, and this study will leverage their expertise toward improving neuroimaging capabilities for the primary tauopathies.”

Speaking on behalf of the Canter family and the many friends who contributed to Carol’s Walk to Cure PSP, Stephen E. Canter said, “We are delighted to partner with CurePSP and the RCF. We hope this grant will provide further support for the promising fundamental research of Drs. Vasdev and Mathis.”

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. 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 https://www.curepsp.org/.

About the Rainwater Charitable Foundation

The Rainwater Charitable Foundation (RCF) was created in the early 1990s by renowned private equity investor and philanthropist Richard E. Rainwater. The RCF supports a range of programs in K-12 education, medical research and other worthy causes. To deliver on its mission to accelerate the development of new diagnostics and treatments for tau-related neurodegenerative disorders, the RCF medical research team manages the Tau Consortium and the Rainwater Prize programs. For more information, please visit http://rainwatercharitablefoundation.org, http://www.rainwaterprize.org and https://tauconsortium.org.

Contact:

Kristophe Diaz, PhD

CurePSP Executive Director  

diaz@curepsp.org

646-725-1453

The post CurePSP extends its partnership with the Rainwater Charitable Foundation to accelerate the development of neuroimaging human biomarkers for progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) and other primary tauopathies appeared first on CurePSP.

“All 30 medical centers in our CurePSP Centers of Care network across the United States and Canada are united by the common goals of offering comprehensive care and enhancing quality of life for the PSP, CBD and MSA community,” said Jessica Shurer, director of clinical affairs and advocacy at CurePSP.

Eligibility for a CurePSP CARES grant includes:

• Collaboration between at least two CurePSP Centers of Care
• Focus on unmet needs in patient-centered approaches to delivering diagnostic services, assessment and therapeutic care, outreach to underserved communities or education of the medical community
• Designed to produce publishable and generalizable data

$81,000 has been allocated to the inaugural CARES grants, and CurePSP is dedicated to increasing funding for this innovative program.

“After visiting many of our CurePSP Centers of Care, I realized they all face different challenges and all have different approaches to address these challenges. They also have different yet complementary goals and strengths. These may include access to care, expansion of remote visits, managing clinical trials, connecting with regional networks of medical providers, implementing multidisciplinary care and educating patients and families on the importance of palliative care,” said Kristophe Diaz, executive director and chief science officer of CurePSP. “One critical objective of this new funding program is to create additional opportunities for centers to learn from each other and therefore accelerate how problems are addressed and solved.”

“When designing the CARES grants, we asked centers to collaborate with one another to understand and attend to the unique needs that exist for PSP, CBD and MSA,” Shurer said. “This is part of the mission for the CurePSP Centers of Care program, and it’s rewarding to create a new avenue for advancing CurePSP’s three pillars: care, consciousness and cure.”

Three projects from seven prestigious medical centers have been selected to receive a CARES grant for the 2022-2023 cycle.

Johns Hopkins University and Massachusetts General Hospital will identify patients who are lacking either reliable transportation to their appointments or internet access for telehealth appointments. The investigators will arrange for transportation or internet-enabled tablets. This pilot program will test if this increased accessibility improves outcomes and if these methods are scalable.

The University of Pennsylvania and the University of California San Diego will focus on end-of-life care preferences among diverse patients. This is an under-researched yet fundamental topic in PSP, CBD and MSA. Their joint project seeks to understand whether sex, race, ethnicity and other sociodemographic factors influence end-of-life care preferences and behaviors. Knowledge gained from this study can inform interventions to improve access to palliative and hospice care services for people from underserved communities.

The University of Chicago, Rush University and Northwestern University plan to create a Greater Chicago Alliance for Support and Education on PSP, CBD and MSA. The three centers will offer a 10-week educational series that will cover disease pathology, diagnosis, common motor and non-motor symptoms, treatment strategies from a multidisciplinary perspective, current clinical trials, palliative care and support resources. This project aims to unite the local PSP, CBD and MSA community in Chicago and offer an approach to education and support that can be replicated in other centers and regions.

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NEW YORK (November 17, 2022) /PRNewswire/ — CurePSP has announced the designation of Queen’s Parkinson’s and Movement Disorders Center in Hawaii and the Department of Neurology at the University of Michigan as CurePSP Centers of Care, bringing the total to 30 centers across the United States and Canada. The expansion of this network of specialized medical centers aims to enhance access to accurate and early diagnosis, high-quality clinical care and comprehensive support for progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) and multiple system atrophy (MSA).

Over 55,000 people in the United States are thought to be living with PSP, CBD and MSA. Current figures for these neurodegenerative diseases are likely underestimated, as many people are misdiagnosed with another condition, such as the more common Parkinson’s disease.

“People with PSP, CBD and MSA benefit from the support and expertise of clinicians with an intimate understanding of their complex symptoms and unique needs,” said Jessica Shurer, director of clinical affairs and advocacy at CurePSP. “Our Center of Care program, which was established in 2017, is pivotal in the efforts to optimize the standard of care delivery and drive multi-center research initiatives for this patient population.”

Centers must demonstrate comprehensive care, collaboration with CurePSP and the Center of Care network, community education and outreach, professional education and connection to research. “We are thrilled for Queen’s Medical Center and the University of Michigan to join our network committed to PSP, CBD and MSA,” Shurer said.

The partnerships come at an opportune time for both institutions, as they have each been building multidisciplinary approaches to care for PSP, CBD and MSA that will benefit from the integrated CurePSP network of support and resources. Dr. Michiko Bruno of Queen’s Medical Center looks forward to sharing these options with her patients who are always eager for new information.

“CurePSP is helpful because we don’t have to start every patient from scratch,” Dr. Bruno said. “We can lean on a collective wisdom to get them resources.”

Dr. Bruno had been developing her center’s telemedicine offerings before the pandemic, and those options have only become more accessible since, giving patients alternatives to traveling long distances to other parts of the United States for care. The new partnership with CurePSP ensures that her programs will continue to grow.

“We’re always trying to build coordination,” Dr. Bruno said. “This visibility will lead to even more hope.”

Dr. Chauncey Spears of the University of Michigan views joining the CurePSP Center of Care network as a natural step in the process of improving person-centered care. The neurology clinic collaborates with speech language pathologists, urologists and other disciplines to shape care based on a patient’s input and goals. Dr. Spears emphasizes his patients’ desire for disease benchmarks to understand their progression and maintain their quality of life.

“The patient’s needs are amplified,” Dr. Spears said. “We’re trying to prioritize the things they value most in life to lessen the burden and make the most of this.”

The University of Michigan joins Michigan State University (MSU) as the only other CurePSP Center of Care in Michigan, and Dr. Spears wants state residents to know that both resources are within reach. He hopes that increased awareness of PSP, CBD and MSA will accelerate discovery of treatments and a cure, and he remains focused on using the resources of CurePSP and the Center of Care network to serve their community.

“Whether it’s us or MSU, we all share the same goals,” Dr. Spears said. “It’s nice to collaborate on our strengths and continue formalizing access to research.”

For a complete listing of CurePSP Centers of Care, click 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. 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).

Contact:

Kristophe Diaz, PhD

diaz@curepsp.org

646-725-1453

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Director / Associate Director of Scientific Affairs and Partnerships

Download Job Description Here

The Opportunity:

CurePSP seeks a Director or Associate Director of Scientific Affairs and Partnerships. This role offers the opportunity to advance key strategic initiatives and partnerships as a senior member of a leading neuroscience nonprofit. This position reports to CurePSP’s Executive Director (ED)/Chief Science Officer (CSO) and is an exciting chance to advance the organization’s scientific and medical mission.

This position is remote, but location in the eastern US time zone is desired.

The Organization:

CurePSP is the leading non-profit 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, it establishes important partnerships and funds critical research. Through advocacy and support efforts, it 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 of its services. Its mission is to raise awareness, build community, improve care and find a cure for PSP, CBD and MSA, through three pillars: Care, Consciousness, and Cure.

Since 1990, CurePSP has funded more than 220 research studies and is the leading source of information and support for patients and their families, caregivers, researchers, physicians, and allied healthcare professionals. CurePSP has a motivated team dedicated to improving awareness, educating and supporting patients and families, and funding research to accelerate treatments and a cure for PSP, CBD and MSA. Based in New York City, CurePSP currently employs a staff of eleven.

CurePSP supports finding a CURE through 5 strategies: 1) a seed funding program in Tauopathy research; 2) a series of partnerships including with the Alzheimer’s Association, the Rainwater Charitable Foundation, and other critical stakeholders focused on curing neurodegeneration 3) the organization of international scientific symposia, workshops, and roundtables 4) short-term research grants for graduate students working on PSP, 5) a set of collaborations with large and small biotechnology and pharmaceutical companies exploring or pursuing research and clinical trials in PSP, CBD and MSA.

The Role

Primary Responsibilities:

• In close collaboration with and in support of CurePSP’s Executive Director / CSO, the Director/Associate Director will:
• Direct CurePSP’s grant program and relationships with funded scientists to optimize impact.
• Maintain relationships with key stakeholders from nonprofits, industry, and government to accelerate research and therapeutic developments for PSP, CBD, and MSA.
• Build and develop CurePSP’s strategic roadmap, and ensure the organization is on track to achieve these strategic goals.
• Develop new programs and initiatives to make sure PSP, CBD, and MSA benefits from advances in neurodegeneration research.

The Director/Associate Director will also:

• Represent the scientific leadership of CurePSP at the organization’s annual research symposium, and assist staff in its strategic planning and execution.
• Keep current on emergent research and related disorders through literature review, attending conferences, and communication with key scientists and key opinion leaders.
• Contribute to the engagement of major donors and in the development of fundraising strategies.
• Travel up to 25%, some internationally

Background Requirements:

• Doctorate (Ph.D., MD, or equivalent) in neurosciences or related field
• Program management experience in neurosciences or related field, preferably in non-profit
• Goal-oriented, collaborative, team player mentality
• A proven record of strategic thinking
• Strong desire to make a difference for a mission-driven organization
• Self-motivated, highly organized, and able to work independently
• A desire to build and implement new strategies and programs and be part of a growing organization
• Strong communication skills
• An ability to develop and maintain professional relationships with individuals and stakeholder organizations in diverse sectors
• Sensitivity and compassion for patients, and their families and caregivers

Desired Skills:

Given the potential for this team member to contribute in a growing organization, any one or combination of the following is also desired:

• Experience in development and/or fundraising in business, academic, or nonprofit environment
• Experience in clinical trial design and drug development
• Experience in working with the pharmaceutical industry and with multidisciplinary stakeholders
• Experience or skills in other areas related to the scientific and medical mission of CurePSP

Salary and Benefits: This position offers a salary range of $120,000-$160,000. Salary and title (Associate Director or Director) will be commensurate with experience. CurePSP offers a comprehensive benefits package that includes: retirement, medical, dental and vision

To apply:

Foundation Advisors, LLC has been retained by CurePSP to conduct the search for the Director / Associate Director of Scientific Affairs and Partnerships. Brooke Rosenzweig, PhD, is leading this search; to apply, interested candidates should email a résumé to brooke@foundationadv.com.

CurePSP, Inc. is an equal opportunity employer. We respect and seek to empower each individual and support the diverse cultures, perspectives, skills and experiences within our workforce.

The post CurePSP is hiring! Join us in our mission! appeared first on CurePSP.

Judy Coughlin, the wife of ex-NFL head coach and executive Tom Coughlin, died Wednesday at the age of 77 after a lengthy battle with progressive supranuclear palsy (PSP), the family announced. 

“My cherished wife and our beloved mother and grandmother, Judy Whitaker Coughlin, passed away this morning at the age of 77,” Coughlin said in a statement. “Judy was a remarkable woman in every way. She lived a life filled with love and unselfishly gave her heart and soul to others. Judy made you feel like an old friend from the first hug to the last. She was a mother to all on and off the field.”

Coughlin, who began his head coaching career in 1995 with the Jacksonville Jaguars and won two Super Bowls with the New York Giants, revealed Judy’s PSP diagnosis in 2021. 

“A friend said we don’t get to choose our sunset, and that’s true, but I am so blessed to get to hold Judy’s hand through hers,” Coughlin said in an essay for the New York Times. “And to all those who are caring for a loved one, take a break when you need it and don’t be too hard on yourselves. It’s not easy. And for all those wondering how they can help, it’s simple: Don’t forget about the caregivers.”

To learn more about PSP, click here. 

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