Support Group Leader Advisory Board
The Advisory Board helps strategize, plan and implement programming for the support group leader network.
Evette has pulmonary arterial hypertension (2005) secondary to scleroderma (1997) and started leading the Nashville, TN support group in 2009. The group meets each month, March through November, at the Vanderbilt Clinic. There are usually 15 – 20 patients and caregivers in attendance. Evette creates an agenda before each meeting. She is the chair of the Mid-Central Regional Networking Group. The conference calls always end with a joke!
Lindsay was diagnosed with idiopathic/primary pulmonary arterial hypertension in 2007 and is leader of The Rocky Mountain Wheezers (Southern Colorado PH Support Group) since 2010. She also runs a social gatherings support group in both Denver and Colorado Springs. The group meets every month at different locations, hosting a variety of activities like cocktails and canvasses, pottery studios, festivals, poker nights and comedy shows. Lindsay is chair of the Pacific Northwest Regional Networking Group. She leads her group like a family gathering with open arms.
Nicole was diagnosed with PH at the age of 38. Like many PH patients, she had never heard of or known anyone with the disease. In January of 2016, she started a support group in Lexington, Kentucky, and has since immersed herself in PHA activities. She joined the advisory board for the opportunity to collaborate with other support group leaders and make sure that resources, education and advocacy for PH remain a top priority.
Debra has been leading the Dallas PH Support Group in Dallas, TX since early 2017. She normally uses an agenda to keep them meetings on track, however, she is very flexible if they veer off. The group is very close knit and family oriented. They have monthly meetings. Debra is chair of the Southwest Regional Networking Group. Debra is also on the ZebraPhest planning committee.
Chooda was diagnosed with PH in May 2010 after being misdiagnosed and treated for Polycythemia Vera for two years. In addition to being the leader of the South Miami group for the past two years, Chooda also organizes the local PHun Walk and other events for PH awareness. He is also working on establishing a PH association in Nepal (phanepal.org) and helps leads the local Nepalese community in Florida. Chooda joined the advisory board so that he can continue advocating for the welfare of fellow PH patients.
Pat was diagnosed in 2011 with PH and scleroderma. She leads the Lower Westchester County PH support group and is chair of the Mid-Atlantic Regional Networking Group. From April to December each year, her support group meets at local restaurants in Westchester County. Pat always uses an agenda to stay organized and focused and list PHA information and resources. Her biggest strengths as a leader include problem solving, sharing resources and being attentive to group members.
Mike was officially diagnosed with IPAH in 2010 and started leading the Jacksonville Area support group in 2011. Mike’s group meets monthly and he provides an agenda at each meeting. Mike is chair of the Northeast Regional Networking Group. I always respect the members and make sure they have time to share and express what is on their mind. At PHA’s 2018 International PH Conference, Mike served on a planning committee, spoke on a panel about living with PH as a man and led a support group for men with PH.
Tina is the pulmonary hypertension coordinator at Froedtert and the Medical College of Wisconsin, a position she has held since November 2009. Tina has been leading the Southeast Wisconsin PH support group for the past four years. Recently, the Milwaukee Group (St. Luke’s Medical Center) and the Southeast Wisconsin group, (Froedtert and the Medical College) have merged in order to combine their resources to try and reach even more patients. Her co-leader for this new group is Nancy Niebauer, R.N., PH coordinator at St. Luke’s Medical Center. Tina joined the advisory board to help others who are struggling with their support groups by sharing ideas and resources.
Doug has led the Midlands SC Palmetto PHriends support group in the Columbia, SC area for more than eleven years. On the Support Group Leader Advisory Board, he is chair of the Southeastern Regional Networking Group, which includes leaders in Florida, Georgia, Alabama, Mississippi, Louisiana, South Carolina, Tennessee, Arkansas, North Carolina, and Kentucky. Doug tries to lead his group with warmth, encouragement and appreciation for everyone who attends.