PHA Events

Topic: TBA

Leader: Bonnie Patricelli

Email: bonabona@comcast.net

Phone Number: 856-904-6867

Topic: Palliative care: Coping with Chronic Illness

Speaker: Shoshawna Rainwater, MSW, LCSW Palliative Care Social Worker

Leader: Brittany Watson

Email: portlandpah@gmail.com

Phone Number: 503-963-3161

Topic: Emergency Preparedness

Speaker: Jennifer Johnson, RN, BSN

Sponsor: Accredo

Leader: Heather Arena

Email: ph.michiana@gmail.com

Phone Number: 269-982-5864

Únase a esta llamada de apoyo mensual para conectarse con otros pacientes y conversar sobre sus luchas y triunfos, así como para recibir apoyo y consejos de otros pacientes con hipertensión pulmonar (HP). Un paciente con HP facilitará las presentaciones y la conversación. Únase a la conversación o simplemente escuche.

This meeting is held monthly for young adults with pulmonary hypertension who want to connect with other young adult patients via phone or video conferencing. The call is moderated by two young adult facilitators.

Meeting information will be sent to your email address when you submit your registration.

Leaders: Janessa Curnow and Shannon O’Donnell

Email: PHAGenerationHope@gmail.com

Topic: Health Care Open Enrollment 2023

Speaker: Jane Northrop, PHA support group leader

Leader: Jane Northrop

Email: orlandophgroup@gmail.com

Phone Number: 321-245-8435

Join this monthly support call to connect with other patients and discuss struggles and triumphs, and to receive support and advice from other PH patients. There is a PH patient present to facilitate introductions and conversation. Join the conversation or simply listen.

Meeting information will be sent to your email address when you submit your registration.

Leader: Carla Kinsey

Email: Carla_PSC@outlook.com

Topic: Oxygen and sleep therapies

Speaker: TBD

Leader: Nikole Nichols

Email: nikdunich@hotmail.com

Phone Number: 408-314-0114

Topic: Assessing Risk in PAH: Is Your Treatment Plan Working?

Speaker: Mary Whittenhall, MSN, Brown / Rhode Island Hospital Pulmonary Hypertension Center

Leader: Ashley Horton

Email: bostonphs@gmail.com, Wendybostonph@gmail.com

Phone Number: 708-307-6637

Topic: Annual Family Picnic

Leader: pat graham, debbie baugh

Email: phgroupsac@gmail.com

Phone Number: 410-353-0350, 916-200-3567

Topic: Living with PH

Speaker: TBD

Leader: Kristine Ritenour

Email: ritenour@musc.edu

Phone Number: 843-792-2127

Topic: Bingo Night

Leader: Stephanie Krusch, Julie Shea

Email: Skrusch@uchc.edu, jushea@uchc.edu

Phone Number: 860-679-8300

Topic:  Navigating PAH Benefits and Resources

Speaker: Ellie Clyburn, BSN, RN

Sponsor: CVS Pharmacy

Leader: Connie Gill

Email: cgill25@outlook.com

Phone Number: 513-368-8693

Call in to connect, learn, and share strategies and experiences caring for your child with PH.

Meeting information will be sent to your email address when you submit your registration.

Leader: Jane Northrop

Email: jbones1961@gmail.com

Topic: Insurance 101 – How to Choose the Best

Speaker: Jenny Chambrone, Independent Health Insurance Specialist

Leader:  Michele Freeman

Email: oregonphgroup@gmail.com

Phone Number: 541-408-4943

Topic: Coffee with open discussion

Leader: Alice Yount

Email: ayount@helmsbriscoe.com

Phone Number: 952-221-5475

Topic: New information on Sotatercept

Speaker: Christopher Thomas, MD

Leader: Beth DeCristofaro

Email: bethd0323@gmail.com

Phone Number: 703-577-4779

Topic: Navigating PAH Benefits and Resources

Speaker: Speaker: Dana Cecher, Nurse Manager/CVS Caremrk

Sponsor: CVS Pharmacy

Leader: Benita Kosiara

Email: benitak9588@comcast.net

Phone Number: 630-942-9588

Topic: Open Discussion

Leader: Pat Hellyer

Email: pathellyer79@gmail.com

Phone Number: 561-628-5597

Topic: Pulmonary Rehab

Speaker: Stewart Sisson, MS, RRT-NPS, C-NPT, C-ELBW

Leader: Diane Brackin, Andrea Redstone

Email: dsmith4@ecommunity.com, ARedstone@ecorm,unity.com

Phone Number: 317-621-8486, 317-621-8656

Topic: Q&A with Dr. Allen

Speaker: Samuel Allen, DO, pulmonologisVpulmonary Hypertension specialist

Leader: Carla Kinsey

Email: moph-sg@outlook.com

Phone Number: 586-530-0160

Join this monthly telephone support group to connect with other CTEPH patients and discuss struggles and triumphs and receive support and advice from others experiencing the same challenges.

Meeting information will be sent to your email address when you submit your registration.

Leader: Missy Storm

Email: missyjstorm@cox.net

Join this monthly support call to connect, learn, and share strategies and experiences with PH caregivers and parents across the country. There is a PH caregiver present to facilitate introductions and present a discussion topic.

Meeting information will be sent to your email address when you submit your registration.

Leader: Michele Freeman

Email: oregonphgroup@gmail.com

Únase a esta llamada de apoyo mensual para conectarse con otros pacientes y conversar sobre sus luchas y triunfos, así como para recibir apoyo y consejos de otros pacientes con hipertensión pulmonar (HP). Un paciente con HP facilitará las presentaciones y la conversación. Únase a la conversación o simplemente escuche.

This meeting is held monthly for young adults with pulmonary hypertension who want to connect with other young adult patients via phone or video conferencing. The call is moderated by two young adult facilitators.

Meeting information will be sent to your email address when you submit your registration.

Leaders: Janessa Curnow and Shannon O’Donnell

Email: PHAGenerationHope@gmail.com

Join this monthly support call to connect with other patients and discuss struggles and triumphs, and to receive support and advice from other PH patients. There is a PH patient present to facilitate introductions and conversation. Join the conversation or simply listen.

Meeting information will be sent to your email address when you submit your registration.

Leader: Carla Kinsey

Email: Carla_PSC@outlook.com

Topic: Meet & Greet/ Planning our meeting calendar. Space is limited, RSVP soon!

Leader: Mickie Ulibarri

Email: mickieulibarri@gmail.com

Phone Number: 805-556-5588

Topic: Make A Wish

Speaker: Tessa Dvoraka, Medical and Community Outreach Coordinator

Leader: Shelly Screen

Email: sscreen1@jh.edu, talkire1@jh.edu

Phone Number: 727-767-8416

Topic: Celebration Lunch

Leader: Karen Fragale

Email: Believegod2@yahoo.com

Phone Number: 913-217-5456

Topic: Caring for Caregivers

Speaker: Jennifer Johnson, BSN, RN, CRNI

Leader: Lala Juarez

Email: xoLalaBear@gmail.com

Phone Number: 801-663-4897

Topic: Caregiver Support for Patients with PAH

Speaker: Jennifer Johnson, BSN, RN, CRNI

Sponsor: Janssen Pharmaceuticals

Leader: Lala Juarez

Email: xoLalaBear@grnail.com

Phone Number: 801-663-4897