Support Group Meeting Calendar

Topic: Boosting Energy and Quality of Life with Pulmonary Rehabilitation, Exercise and Diet

Speaker: Rachel Damico, MD, PHO

Leader: Laura Camponeschi  Julie Shamberger

Email: lcamponeschi@jhmi.edu, jshambe2@jhmi.edu

Phone Number: 410-614-6311, 410-614-6311

Topic: Healthy Lifestyle

Speaker: Kate Ingebretsen, ACSM-CEP, CSCS Clinical Exercise Physiologist

Leader: Shelly Screen, Tori Alkire

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

Phone Number: 727-767-8416

Topic: Summertime Safety Tips!

Speaker: Colleen Schnell, Support Group Leader

Leader: Colleen Schnell

Email: melonlady1724@hotmail.com

Phone Number: 716-297-1067

Topic: Advocate for your Wellbeing

Speaker: Debbie Kittel, RN

Sponsor: United Therapeutics Corporation

Leader: Connie Gill

Email: cgill25@outlook.com

Phone Number: 513-368-8693

Topic: The New Normal: Life After Diagnosis of PAH

Speaker: Sandy Lombardi, PAH Coordinator at UC San Diego

Sponsor: Janssen Pharmaceuticals

Leader: Sonia Tindel, Lori Kirby

Email: sonia.tindel@lsuhs.edu, ikirby2012@yahoo.com

Phone Number: 318-675-5920, 318-680-1189

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

Call in to meet others who have lost a loved one to PH. Connect, learn and share strategies and experiences dealing with grief and bereavement. Register for an upcoming call and receive call instructions once registered.

Topic:  Yearly Check in With Evan

Speaker: Evan, LMSW

Leader: Evan Holm

Email: evholm@salud.unm.edu

Phone Number: 505-272-2815

Topic: The New Normal: Life After Diagnosis of PAH

Speaker: Jacqueline Brewer, NP, PH Clinical Coordinator

Sponsor: Janssen Pharmaceuticals

Leader: Karen Sawyer

Email: Luluidapple@gmail.com

Phone Number: 517-420-6457

Topic: Open Discussion With Doctor

Speaker: Hernando Garcia, MD, FCCP

Leader: Pat Hellyer

Email: pathellyer79@gmail.com

Phone Number: 561-628-5597

Topic: Annual Picnic

Leader: Anita Macias-Matters

Email: mntcphsg@gmail.com

Phone Number: 952-999-1143

Topic: Nutrition and Diet in Pulmonary Hypertension

Speaker: Lauren Hulett, BSN, MBA, RN

Leader: Kelsey Loethen

Email: phmizzou@outlook.com

Phone Number: 573-882-8788

Topic: Exercise and Pulmonary Rehabilitation in PH

Speaker: Sara Ghandehari, MD, Director, Pulmonary Rehabilitation Program, Cedars-Sinai Medical Center

Leader: Khushbool Goel

Email: khushboo.goel@cshs.org

Phone Number: 310-423-6303

Topic: General Discussion

Leader: Colleen Connor

Email: connor_colleen@comcast.net

Phone Number: 610-329-4993

Topic: Palliative Care

Speaker: Alexia Torke, MD

Leader:  April Blakley

Email: ablakle1@iuhealth.org

Phone Number: 317-963-1860

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

Topic: Learning about PH Clinical Trials

Speaker: Mallory Newsted & Ari Williams, U of M Clinical Research Coordinators

Leader: Beverly Lipmyer

Email: beverlylip@comcast.net

Phone Number: 734-662-8433

Topic: Test results! What does my doctor look for? What do those test results mean for my treatment plan?

Speaker: Jalil Ahari, MD

Leader: Beth DeCristofaro

Email: bethd0323@gmail.com

Phone Number: 703-577-4779

Topic:  Indoor Picnic

Leader: Gloria Hamm

Email: Glolhamm@aol.com

Phone Number: 610-799-2766

Topic:  Discussion: Life with PH

Leader: Bonnie Patricelli

Email: bonabona@comcast.net

Phone Number: 856-904-6867

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: Navigating PAH Benefits and Resources

Speaker: Dawn Belcher, RN and Ellie Clyburn, RN

Sponsor: CVS Pharmacy

Leader:  Tiffani Brown, Debbie Kittel

Email: tiffani9094@gmail.com, debra.kittel@osumc.edu

Phone Number: 614-325-3941, 614-685-3049

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: Palliative Care and PH

Speaker: Rebekah Rogers, RN

Leader: Karen Fragale

Email: Believegod2@yahoo.com

Phone Number: 913-217-5456

Topic: Traveling with PH

Leader: Margie Chan, Sue Liss

Email: mchan624@aol.com, sjliss1 O@gmail.com

Phone Number: 773-398-9155, 720-334-4136

Topic: Disability FAQs Presentation

Speaker: Nathan Cole, Public Affairs Specialist

Leader: Lala Juarez

Email: xoLalaBear@gmail.com

Phone Number: 801-663-4897

Topic: Insurance: How to Navigate the Open

Speaker: Mark Miller, Patient Care Consultant

Leader: Kelly Dickson

Email: kelly.dickson@anmedhealth.org

Phone Number: 864-617-9567

Topic: Coping with PH

Food provided by: PHA

RSVP to Michelle by Aug. 31

Phone: 812-489-1069

Email: mlreller@yahoo.com