Get involved with CurePSP
There are many ways that you can support our cause.
Thinking of CurePSP in your estate planning will provide a lasting legacy for you and your loved ones. Volunteer events, while they require planning and hard work, are fun, fulfilling, social and can raise significant funds for the foundation and create awareness for our mission. Purchasing branded merchandise raises awareness of CurePSP and helps to fund our work. So find a way to support CurePSP that suits your budget, interests and time availability and help us to find the cure!
Donate
CurePSP could not be at the center of the fight against neurodegeneration without our loyal donors, and we thank every one of them for their help.
Helping CurePSP can be done in a variety of ways, and your money will go immediately to work helping us to provide; information where it is needed most; support for patients; various programs of awareness and education; and funding the most promising research into treatment and a cure for neurodegeneration.
You can make a tribute gift in honor or memory of someone, and CurePSP notify them/their family of your gift. You can make a recurring monthly or annual gift, that will increase your impact on PSP, and help CurePSP to invest in bigger-picture, longer-term research and programs. Or you can simply make a gift to CurePSP.
Volunteer
Our operations rely heavily on donors and volunteers, and we are always looking for extra hands to assist. Volunteering for a CurePSP Organization event such as our Family Conferences or Research Symposiums, or volunteering to become a support group leader is always appreciated. Our support group leader program includes training, guidance, and connection to a community of other group leaders across the country; for more information email info@curepsp.org.
If you have professional skills and time to spare we have various operational duties that you can help with; marketing, event planning and public relations, to name just a few. Give us a call at 347-294-2873 (CURE) to see how you can help.
Fundraising
Many of our community hold their own fundraising and awareness events in their local area, to great success. You don’t need to be an experienced event planner or fundraiser to host a great event, and CurePSP can assist with advice, planning, webpage building, donation management and social media promotions. We even have comprehensive planning guides for various types events for you to use. Contact Zendrian@curepsp.org with your ideas and we’ll get the ball rolling, you’ll be surprised how much fun it is!
Invest
We have many opportunities to invest in and be a part of our most promising initiatives and programs and leave a lasting legacy. Investment opportunities include two tiers of research programs – venture grants and enterprise grants. Legacy funds provide families and foundations a way to name a program or study in honor of a loved one. The PSP Genetics Consortium allows partnership in PSP’s biggest and first whole genome study of 3,000 participants, in collaboration with the Tau Consortium. Our Brain Bank program is an organ donation program that supports post-mortem autopsies, providing final conclusive diagnoses for families struggling for answers. CurePSP reimburses costs of this donation.
Brain Donation
Often a difficult topic to raise, and the last thing families think about when a loved one passes away, donating a patient’s brain after death is the most precise way to receive an accurate diagnosis of the patient’s illness. PSP, CBD, MSA and related diseases are hard to diagnose, and many families struggle for answers in the early stages of the illness. Sometimes, even a diagnosis of PSP can seem accurate but the autopsy pinpoints CBD, helping the families to understand exactly what happened to the person they knew and loved, bringing much-needed closure.
If you are considering brain donations, please email Alex Klein, Vice President – Scientific Affairs, at klein@curepsp.org.
Download the Brain bank Brochure here
Merchandise
You can help CurePSP support patients, families and caregivers and fund innovative research into treatments and cure by shopping from our store. By purchasing and wearing our apparel, you are raising awareness everywhere you go.
Visit the CurePSP Merchandise Store!
Upcoming Events
CurePSP produces a number of events yearly that are of interest to researchers, physicians, allied health professionals, patients, families and carepartners. These events bring together leading professionals from around the world with our community of patients to share latest brain disease research, information and management advice. Volunteers are always welcome, see how you can help.
2017 Midwest Family Conference, Chicago, IL., June 23-24
CurePSP Family Conferences bring together patients and their families with others who are facing the same challenges for educational programming, and fellowship at a time when outside social opportunities may be shrinking. A key feature of CurePSP’s mission of care, consciousness and cure, the family conferences have become, from humble beginnings, a major biannual event for the community of patients and families affected by neurodegeneration.