CurePSP Southwest Family Conference
$0 – $50
CurePSP Southwest Family Conference

CurePSP Southwest Family Conference

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Hilton Phoenix Airport

2435 South 47th Street

Phoenix, AZ 85034

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Description


Among its various educational activities, CurePSP sponsors and organizes family conferences across the country, providing people with the opportunity to learn more about PSP, CBD and MSA and to develop a sense of community. We recognize that these diseases present daily challenges for patients and families.

The conferences include various speakers with in-the-field expertise - neurologists and movement disorder specialists who work directly with patients and their families. These experts address issues related to day-to-day life including the best ways to manage symptoms, the impact of the diseases on the family, and how to cultivate perspective of meaning and joy despite the struggles of the disease.

In addition to the educational facts learned during the session, patients, caregivers, and families learn that they are not alone. Attendees leave the meeting having forged new friendships in the PSP, CBD and MSA communities.

CurePSP strives to meet the needs of those who attend our conferences and actively seeks feedback to improve future programs. We place great value in identifying the topics or speakers that are of the greatest interest to attendees.


  • A sleeping room block at $139 a night (not inclusive of tax, etc.) at the Hilton Phoenix Airport is available here.
  • Interested in being a sponsor? Check out our packages here.
  • Want to attend for free as a volunteer? Just click the register button!




Friday, March 17th, 2017

12:30-3:30pm: Support Group Facilitator Training

Have you ever wondered what it takes to be a support group leader? Attend this training to bring back knowledge to your hometown to start your own CurePSP support group.

3:30pm-5:30pm: Support Groups

Two support groups will be held. One will focus on the needs of the care partner and the other support group will focus on patients.

7:00-9:00pm: Networking Event

Come meet other attendees and some of the CurePSP board members. You'll hear about other people's journeys and how you can become involved in the foundation.


Saturday, March 18, 2017

7:45-8:30am: Breakfast and Registration

8:35-8:45am: Welcome with Bill McFarland, Chair, CurePSP Board of Directors

8:45-9:45am: Brain and Clinical Trials 101

Alex Klein, Ph.D, CurePSP Vice President-Scientific Affairs, will present an overview of neurodegenerative diseases and the resources available from CurePSP for patients and families. He will also present on what a clinical trial is and the difference in phases.

9:45-10:45am: Overview of MSA, PSP, and CBS and the typical trajectory of the diseases

What are PSP, CBD and MSA? Holly Shill, M.D., Director of the Muhammad Ali Parkinson Center at Barrow Neurological Institute in Phoenix will compare and contrast the different disease areas and what the typical trajectory of them are.

10:45-11:05am: Break

11:05am-12:05pm: Simulated Patient Appointment

Have you ever wondered what happens at a movement disorders appointment? Shyamal Mehta, M.D., Ph.D., Assistant Professor of Neurology at the Mayo Clinic in Phoenix will present with a patient and care partner what goes on when you meet with a neurologist and what you should be asking them.

12:05-1:00pm: Lunch

1:00-2:00pm: Ongoing Clinical Trials, Myths About Clinical Trials, and the CurePSP Patient Engagement Program

David Shprecher, DO, Msci, Movement Disorders Director at Banner Sun Health Research Institute in Phoenix, will engage the audience as to what the local options are for clinical trials. He will also clarify what is fact and what is fiction when you hear about a Clinical Trial.

Trish Caruana, MSW, CurePSP Vice President and PEP President & Chief Executive Officer, will talk about the Patient Engagement Program (PEP), the connection with CurePSP, and patients being sought for clinical trials.

2:00-3:15pm: Care Partner Resources Panel

This panel of experts discuss what hospice and palliative care are and why you shouldn't fear them, what exactly ambiguous grief is and how it effects care partners, how and why you have to be your own advocate during your movement disorder appointments, and how to prepare your finances in the face of a diagnosis.

  • Moderator: Amy Branch, CurePSP Board Member and Chair of the Major Gifts Committee
  • Ileen McFarland, CurePSP Board Memeber and Chair of the Patient and Care Partner Advocacy Committee
  • Lori Nisson, MSW, LCSW, Clinical Social Worker, Family & Community Services, Banner Sun Health Research Institute
  • Hospice of the Valley, Phoenix, AZ
  • Lauren A. Smith, Brain disease awareness advocate and care partner of her father

3:15-3:45pm: Break

3:45-4:45pm: Meet the Therapists Panel

  • Moderator: Dawn Magid, SW, Barrow Neurological Institute, St. Joseph’s Hospital and Medical Center
  • Top 5 Things your Physical Therapist Wish You Knew - Jennifer Anderson, PT, DPT, NCS, CSRS, Board Certified Neurologic Clinical Specialist, Founder, Doctor of Physical Therapy
  • Topic To Be Announced - Tara Chay, MA CCC-SLP, MSCS, ATP, Rehab Program Coordinator and Speech-Language Pathologist, Muhammad Ali Movement Disorders Center, Barrow Neurological Institute, St. Joseph’s Hospital and Medical Center

  • Topic To be announced - Jordan Staenberg, OTD, OTR/L, Muhammad Ali Movement Disorders Center, Barrow Neurological Institute, St. Joseph’s Hospital and Medical Center

4:45-5:00pm: Closing by Bill McFarland, Chair, CurePSP Board of Directors



FAQs

What are my transport/parking options getting to the event?

There is a free hotel airport shuttle and the parking onsite is free!

Where can I contact the organizer with any questions?

Contact the Events team at events@curepsp.org or 800-457-4777

Can I update my registration information?

Yes! This can be done through your Event Brite profile however if you run into issues a member of our events team can help.

Is my registration/ticket transferrable?

Yes, please change the information in your Event Brite profile however if you run into issues a member of our events team can help.

Can I update my registration information?

Yes, please change the information in your Event Brite profile however if you run into issues a member of our events team can help.

Do I have to bring my printed ticket to the event?

Although preferred it is not required.

The name on the registration/ticket doesn't match the attendee. Is that okay?

Yes, we understand that last minute changes happen and we will be happy to accept the new attendee.

Can I update my registration information?

Yes, please change the information in your Event Brite profile however if you run into issues a member of our events team can help.


I have food allergies whom do I inform?

Please email the events team at events@curepsp.org as soon as possible so they may make alternate arrangements.



  • Jennifer Anderson

    Jennifer Anderson

    Root Physical Therapy

    Founder

  • Amy Branch

    Amy Branch

    CurePSP

    Major Gifts Chair

  • Trish Caruana

    Trish Caruana

    Patient Engagement Program (PEP)

    President and CEO

  • Tara Chay

    Tara Chay

    Muhammad Ali Movement Disorders Center

    Rehab Program Coordinator and Speech-Language Pathologist

  • David Kemp

    David Kemp

    CurePSP

    President

  • Alex Klein

    Alex Klein

    CurePSP

    Vice President, Scientific Affairs

  • DM Dawn Magid

    Dawn Magid

    Muhammad Ali Movement Disorders Center

    Social Worker

  • Bill McFarland

    Bill McFarland

    CurePSP

    Chair, Board of Directors

  • Ileen McFarland

    Ileen McFarland

    CurePSP

    Patient and Care Partner Advocacy Committee Chair

  • SM Shyamal Mehta

    Shyamal Mehta

    Mayo Clinic

    Assistant Professor of Neurology

  • Lori Nisson

    Lori Nisson

    Banner Sun Health Research Institute

    Family and Community Services Director

  • Holly Shill

    Holly Shill

    Barrow Neurological Institute

    Director of the Muhammad Ali Parkinson Center

  • David Shprecher

    David Shprecher

    Movement Disorders Director

    Banner Sun Health Research Institute

  • Lauren A. Smith

    Lauren A. Smith


    Care Partner

  • Jordan Staenberg

    Jordan Staenberg

    Muhammad Ali Movement Disorders Center

    Occupational Therapist


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Date and Time

Location

Hilton Phoenix Airport

2435 South 47th Street

Phoenix, AZ 85034

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