Leadership

Jeanne Siegel, Executive Director

Jeanne began as the Executive Director for the National Neutropenia Network in 2024.

Jeanne lives in Cincinnati, Ohio with her husband Chris and son Will. After many years as a paralegal, Jeanne switched careers to work in nonprofit. Jeanne brings almost a decade of experience in nonprofit leadership and a relentless drive to advance awareness, support, and research initiatives within the neutropenia community. Her dedication stems from being a mom to their youngest son, Alex, who was diagnosed with Severe Congenital Neutropenia at 8 weeks. Alex passed away in July, 2022 at the age of 9 after complications from a bone marrow transplant. This profound loss has fueled her commitment to support families affected by neutropenia and continue efforts to find a cure so one day, no family will have to endure similar heartache.

Katie Loader, Accountant

Katie is the sister of Kara Loader, who was born with Severe Congenital Neutropenia. In 2007 Katie attended her first conference with her family and in 2011, Katie’s family began raising funds to support the NNN.

Katie will be graduating from West Liberty University in May with a Bachelor’s degree in accounting. During her time outside of the classroom, she is a member of the West Liberty University Women’s Tennis team. In her leisure she enjoys spending time with her friends and family, exercising, playing tennis, reading, and kayaking.

Before joining the National Neutropenia Network, Katie has been an intern for the Genesis HealthCare Systems Foundation in Zanesville, Ohio and is currently an intern at FeltonCPA in Wheeling, WV.

Gretchen Long, Chair

Gretchen graduated from Ohio University with a degree in magazine journalism and English and film specializations. Gretchen and her husband Thad live in Medina, Ohio with their three children.  They enjoy spending time with extended family at Linwood Park on Lake Erie, which has inspired two self-published books and a card game.

A spontaneous mutation led to the Long’s first firstborn, Tate, having cyclic neutropenia.  They became actively involved in the neutropenia community within months of his diagnosis in August of 2011 at 16 months old. They dedicated time and energy to raising funds for neutropenia research through the Ella Jewell Foundation, attended Family Conferences to learn more and make friends with other neutropenia families. Gretchen joined the NNN board in January of 2017.

In her full-time work, Gretchen Long oversees strategic philanthropy initiatives and employee volunteerism at Westfield, a personal and commercial lines property and casualty insurance company headquartered in northeast Ohio.  Westfield’s aligns its philanthropic strategy with its core values, to distribute $3 million dollars to primarily support safety, disaster recovery and family stability programs.

In addition to the NNN, Gretchen is actively involved with several of the nonprofits Westfield partners with annually, Gretchen serves on the board of Habitat for Humanity of Ohio and the grant committee for the Insurance Industry Charitable Foundation’s Ohio Chapter.  She is a graduate of Leadership Medina County and has served as a loaned representative for United Way of Medina County.

Tammy Loader, Secretary

Tammy Loader lives in Cambridge, Ohio with her husband Bill and their two daughters Katherine and Kara. The Loaders became involved with neutropenia in 2003 when their youngest daughter, Kara was born with the condition. They attended their first National Neutropenia Network Family Conference in 2007 as a way to continue to learn as much as possible about neutropenia. The conference proved to be an extremely valuable resource for the family.  Tammy and her family began raising funds for neutropenia research in 2011 and continue raising funds for both the NNN and the Ella Jewell Foundation with their annual Harvest A Cure for Neutropenia event.

Tammy graduated from West Virginia University with a Bachelor degree in Speech Pathology and Audiology. She earned her Master of Science in Rehabilitation Counseling. She holds credentials as a Certified Rehabilitation Counselor, Licensed Professional Counselor and Alcohol and Drug Counselor. She has worked as a Counselor in the fields of addictions and domestic violence.  Tammy worked as a Vocational Counselor assisting individuals with disabilities for over 20 years and currently serves as Chief Employee Experience Officer for Muskingum Valley Health Centers, a nonprofit community health center with the mission of ensuring all community members have access to high-quality affordable health care.

Tammy joined the NNN board in 2016. She has been a presenter at the conference and is honored to serve on the board and contribute to the success of the organization.

Tammy enjoys camping with family and friends, photography and outdoor activities including hiking and cycling.

Robert McGuinness, Treasurer

First and foremost, Bobby is the proud father of Ella Jewell, Alexa Noelle and Keira Ann McGuinness and husband / teammate / best friend of Kristin McGuinness.  The McGuinness family lives in Fairfield County CT where they’ve been since 2010, one year after their eldest, Ella, was born.  He and his family have been active in the Neutropenia Community since Ella’s birth and diagnosis in 2009.  They have attended several Family Conferences since then, starting with San Diego back in 2010, and have met some fantastic friends which they now share this life journey with.

Bobby is currently an Asset Manager and leads the Sustainability Program for Kite Realty Group, an Indianapolis-based Real Estate Investment Trust that specializes in Shopping Center ownership.  His office is in White Plains, NY but his work takes him around the US as Kite owns and operates properties most major US markets.

Bobby is thrilled to join the NNN Board and brings with him experience of co-founding and running a Neutropenia-focused non-profit, the Ella Jewell Foundation.  Bobby & Kristin founded the Ella Jewell Foundation shortly after Ella’s birth and with the help of several Neutropenia families they have since raised and donated over $500,000 to Neutropenia research and family support services.

Tanya Lakhia

Tanya and her husband Raj live in the Cincinnati, Ohio area. They have been married for 22 years and have 3 sons-Evan, Liam & Braeden. She graduated from The Christ Hospital School of Nursing with her nursing diploma and subsequently from Xavier University with her bachelor’s degree in Nursing. She worked as a medical-surgical inpatient nurse with roles such as a primary nurse provider, patient care coordinator and post renal transplant nurse educator. Additionally, she worked as a nurse/office manager which included experience in outpatient office nursing, surgical scheduling, phone triage, insurance pre-authorization, patient education and physician liaison. Since her son Liam was born, she has spent her time at home with the boys and volunteering in various capacities.

Tanya’s son Liam was diagnosed at 1 month of age with Severe Congenital Neutropenia when he presented with a sore on his hip. His pediatrician quickly identified that he needed lab work which revealed his Neutropenia and a full workup ensued. Liam has been treated with GCSF since that time, has annual bone marrow biopsies and routine lab work. He is otherwise a healthy, almost 17 year-old with an occasional infection that requires additional attention. Tanya and Raj have always maintained the attitude that “these were the cards we were dealt, so we will make the most of it”, but it was Liam’s persistence of wanting “to do something” to help others with Neutropenia that sparked a desire in Tanya and Raj to want to do more as well. Raj served as an NNN board member until recently, Tanya worked with Liam on presentations he could give at school to raise awareness about his Neutropenia (which he did for 5 years!) and they plan annual fundraising events to benefit Neutropenia research and peer support programs. Tanya is also a Peer Support Volunteer for the NNN, and their family has attended several family conferences, which have included both Liam and his older brother Evan either giving presentations or acting as “counselors” at the Kids Camp. Tanya firmly believes that the success in accepting and living with Neutropenia is directly related to the positive approach in dealing with it; parents especially can have a profound impact on how their child will learn to manage Neutropenia themselves when they get older–let’s give these kids an opportunity to be accountable, to be confident and to be voices in their Neutropenia journey.

In addition to her volunteer work supporting Neutropenia research and peer support programs, Tanya enjoys spending time with her family and 2 dogs, volunteering at the boys’ schools and the local Children’s Hospital. She also enjoys any time she can get away to travel with her family.

Vanessa Ploerderl

Vanessa lives in Appleton, Wisconsin with her husband Jeremy and two children Liam and Ella. Vanessa has her degree as a Certified Occupational Therapy Assistant and works at a local Elementary school as an Early Childhood Paraprofessional.

Vanessa was diagnosed with Autoimmune Neutropenia in 2001, at the age of 16. She started working with the SCNIR in 2006 and attended her first NNN conference in 2018. After attending her first conference Vanessa grew as an advocate for Neutropenia with the NNN peer support program, fundraising efforts, and development of a Facebook support group.

Bernice Mena

Bernice is a proud graduate of Florida International University with an MBA specializing in Healthcare Management and currently resides in Miami, FL. Combining her educational background with a personal commitment to healthcare, she works for a national health plan.

Diagnosed with Severe Congenital Neutropenia at just six weeks old, Bernice has faced and overcome significant health challenges throughout her life. In 2018, she attended her first NNN conference. Since then, she has been striving to take an active advocacy role within the community. Through her commitment to the NNN, she hopes to continue raising awareness and support for individuals affected by this rare condition.