Non-Profit Los Angeles Dysautonomia Network’s Inaugural Fundraiser in Pasadena Raises Over $33,000

Over 125 guests attended Los Angeles Dysautonomia Network (LADN)’s inaugural fundraiser on May 21st in Pasadena to celebrate their launch as a nonprofit organization and to raise money for a new grant program to aid dysautonomia patients in need.

Guests included local elected officials Congressmember Judy Chu, LA County Supervisor Kathryn Barger, and Vice Mayor of Pasadena Felicia Williams as well as many of the LADN members who live with autonomic disorders and utilize the services provided by LADN, including support groups, educational and wellness workshops, community building events, and a peer-support program.

Pasadena’s Pie ’n Burger generously donated 100% of the food truck sales at the event to LADN. Co-founders and volunteer Co-Presidents Emily Suñez and Sally Krueger-Wyman announced that between Pie ’n Burger’s donation, a silent auction of 41 items and experiences, and direct donations, LADN’s inaugural fundraiser had successfully raised a total of $33,595, enabling LADN to launch their grant program this fall.

LADN’s fundraiser event helped to bring awareness about dysautonomia, an umbrella term that refers to a group of disorders that cause dysfunction of the autonomic nervous system, which regulates body processes such as heart rate, blood pressure, digestion, respiration, etc. Guests shared their stories and messages of hope on a Dysautonomia Awareness Wall, with one such message reading: “The biggest challenge of living with dysautonomia is the unpredictability of symptoms each day.”

LADN community member Dante Quazzo spoke about his firsthand experience living with a common form of dysautonomia, postural orthostatic tachycardia syndrome (POTS): “chronic illness can be particularly soul crushing…but in this journey I’ve also learned that I am so much stronger than I ever thought I would or could be, and finding LADN was an enormous part of me realizing that about myself.”

LADN founding board member Barbie Faze spoke about the frustrations of being a parent to a child with POTS and the exhaustive search for a diagnosis that is all too common among this patient population, noting that there is “a diagnostic delay of 5 years on average.”

Faze took comfort in the LADN community, sharing that, “LADN offers a safe space for individuals to meet regularly and share experiences good and bad, forging new friendships along the way.”

UCLA lead dietician and LADN founding board member Nancee Jaffe, MS, RDN declared that, “our ability to work with dysautonomia is not where it needs to be.” Jaffe offered words of hope: “I’m very proud to say that UCLA is working toward finding better health care for patients with dysautonomia. We’ve officially formed a multidisciplinary Dysautonomia Task Force as of late last year,” with hopes that this pilot program could eventually develop into a full scale dysautonomia clinic with providers across a range of specialties working together to treat dysautonomia patients.

LADN Co-President Sally Krueger-Wyman acknowledged the expensive toll of searching for answers to dysautonomia and the financial burden of living with POTS – a condition in which it is estimated that a quarter of patients are too ill to work – and offered LADN’s grant program as support: “We have members of our community who struggle – not just with their health – but how to provide for their fundamental needs – the cost of medicine, the price of a roof over their heads…with the start of our financial grant program, we hope to ease their burdens”

Congressmember Judy Chu congratulated LADN with a Certificate of Congressional Recognition, stating, “it is incredible to see what began as a monthly support group in 2018 has now grown into a registered nonprofit organization that has brought together this incredible supportive community of people with dysautonomia all across LA County.”

Congressmember Chu announced, “I want you to know that in Congress I am fighting to raise awareness and find cures for dysautonomia,” noting her support for increased NIH funding for medical research.

LA County Supervisor Kathryn Barger spoke about her support for the LADN community, pledged a $5,000 donation to support LADN’s programs and presented LADN with a congratulatory proclamation from Los Angeles County. Upon learning that 70 million people worldwide live with dysautonomia, Barger commented that, “the numbers are staggering as it relates to the number of families it impacts… and the fact that COVID actually has really shed light on even more numbers… it’s a wakeup call.” LADN also received a Certificate of Recognition from the City of Pasadena, presented by Vice Mayor Felicia Williams.

Los Angeles Dysautonomia Network (LADN) is a 501(c)3 non-profit organization that supports individuals impacted by the health condition dysautonomia through community, education, and financial support. Learn more at LA-DN.org.