Senior Ambassador

Alexandria, Virginia

Heidie is continuing with her fourth term as a Senior Ambassador!! Her initial goal as a Senior Ambassador for the NNN was “to share my knowledge of the disease and my experience with it.  I want to offer hope and educate those who are newly diagnosed and educate those who have never heard of this disease.  Knowledge is power.  I have suffered with this disease for almost 20 years.  It is time to give back.” 

Heidie has definitely achieved her goal through her involvement with the Peer Support Volunteer Program. She says, “I have talked with several individuals diagnosed with neutropenia and have been told I was a tremendous resource for them.  I enjoy helping people newly diagnosed and would like to continue helping these individuals.  I think this program is a great resource allowing people to talk with individuals who have their same disease.  The doctors don’t always know the intimate details of the disease and how to live with it successfully.”

Thank you, Heidie, for your continued commitment to the Neutropenia community and for helping to make a difference for those newly diagnosed!! We are excited to have you continue this great source of outreach for the NNN!

Heidie’s Story

 “I was diagnosed with Neutropenia in 2001.  I had been fighting off infections, fatigue, stomach ulcers and malaise.  There was no diagnoses.  Finally, I moved from Germany back to the States and ended up in Washington State where I went to see Dr. Dale at the University of Washington.  He diagnosed me with Idiopathic Chronic Severe Neutropenia.  I have been living with and managing it ever since.

I was a Major in the United States Air Force when I was diagnosed.  I fought to stay in the military when they tried to medically discharge due to my disease.  I retired after a 20 year career; it took me two years to recover after I retired.  I worked for one more year-though it was from home.  Then I decided to go back to school for my doctorate.

When I was first diagnosed with this disease, I knew I could become either a complacent patient or remain a fighter and live my life.  I have always chosen to live and thrive even though most times it is a struggle.  I have continued to travel the world even though I was told I should not.  It is a choice, though I am quite aware of the risk.”

Conhohocken, PA

Chrissy was diagnosed with Neutropenia in 2000, at the age of 20. She is a former teacher and enjoys volunteering within her community.  She recently coordinated a successful fundraising and awareness campaign for her niece who had been diagnosed with cancer.  She is known to be a good support system and advocate to others as she is empathetic and a good listener.

Chrissy notes: I just attended my first NNN conference and it was life changing for me! I want to become more involved and help others as they have helped me.”

Chrissy plans to become involved with the NNN’s Peer Support Volunteer program. She also hopes to be able to help with future retreats/conferences and in any other capacity to help the Neutropenia community.

We welcome Chrissy as an NNN Senior Ambassador!!

Brooklyn, NY

Jason’s son, Josiah, was diagnosed with Neutropenia in 2019 at 2 years old, after many unknown “illnesses”. Jason and his family are originally from Trinidad–doctors there had no idea what his son’s illness was. After much research and outreach to facilities around the world, Jason found help at The Mayo Clinic, where Josiah is now treated. They also connected Jason with the SCNIR, which eventually led him to the NNN.

Jason is currently completing a 1-year program in Herbalism and Naturopathic Healing, but his background is in IT in the energy sector. He has been involved in his church community where he has been known to get involved and advocate for those in need.  He is seen as a self-starter, a people person and a dedicated husband and father.

Jason notes: “My family attended the family retreat this year. There was a moment that this would not have become a reality, [but] with the support of the NNN we were able to not only meet, but laugh, cry and share stories together. Coming from Trinidad we have never met anyone else with this illness ….for the first time in 5 1⁄2 years we don’t feel alone anymore. “

As a Senior Ambassador, Jason hopes to use his strengths and talents to build up the NNN’s online presence and electronic communication platform for a stronger outreach to our community.

We look forward to having Jason as part of the Senior Ambassador team!

Newnan, GA

Lauren was diagnosed with Severe Congenital Neutropenia when she was younger.  She was previously a volunteer support firefighter and currently volunteers as an EMT with the Medical Reserve Corps in Georgia.  Lauren enjoys fishing, hiking, camping…. anything outdoors. As a Senior Ambassador for the NNN, Lauren states “I want to help make a difference in the lives of people that suffer from Neutropenia.  I also want to raise awareness about Neutropenia and the daily struggle (and sometimes hidden struggles) that come with this disease. I plan to organize a fishing fundraiser to benefit the NNN.” 

Lauren is continuing with her fourth term as a Senior Ambassador! Last Fall she held a benefit fishing tournament at Hard Labor Creek Reservoir in Social Circle, GA. Thanks to the sponsors and all participants, they helped Lauren raise $1,465 for the NNN! Lauren also serves as a Peer Support Volunteer for the NNN.

We are grateful to Lauren for her continued commitment to helping the NNN provide resources to the neutropenia community!!

San Francisco, CA

Maria was diagnosed with Severe Chronic Idiopathic Neutropenia in 2019 after years of frequent illness that eventually led to an infection requiring surgical intervention. Since being diagnosed, she looked for any information she could find on the condition, as well as community to help her understand and cope with her new reality.

Prior to becoming neutropenic, Maria worked as a Master’s prepared Social Worker, as well as an Online Marketing and Sales Manager. She currently spends most of her time writing and performing stand-up comedy.

Maria volunteers as an editor for her neighborhood’s quarterly newsletter.  She also has volunteer experience with the San Francisco Animal Care and Control and a local hospice care center. Part of her hospice experience included volunteering as a camp counselor at a local camp for children of all ages dealing with the grief of losing a loved one.

Maria notes:“Finding the NNN really helped me in the first years of my diagnosis, especially after Covid hit and I had to transition to mostly online social interactions. Prior to attending the NNN retreat in 2023, I had never met anyone with my condition before – it was a life changing experience to be around people who understand what it felt like to live with this rare, exteriorly invisible condition. The NNN helped me better understand chronic neutropenia, how to treat it, and provided the emotional support of community. Now that I am more in sync with the reality of my condition, and more or less stable with my health, I would like to give back to the NNN community in whatever way I can be helpful.”

As a Senior Ambassador, Maria hopes to utilize her talents and experience to contribute to the community outreach efforts with patients/families, as well as physicians.  Additionally, she hopes to work with the NNN newsletter publication and the Peer Support Volunteer program.

We are excited to welcome Maria to our Senior Ambassador team! Thank you for your commitment, Maria!!