Dysautonomia International, Inc.

• Providing educational resources for patients and healthcare professionals to foster understanding and effective treatment.
• Advancing research initiatives focused on conditions like postural orthostatic tachycardia syndrome (POTS) to improve diagnosis and care.

All Proceeds go directly to Dysautonomia International thanks to the nonprofit feature on go fund me.

Growing up, we had what most people would call a normal life. We played with friends, went to the mall, played soccer, etc. But all that changed when Alyssa (now 18 years old) was 12.  It started with bronchitis but then expanded into something much worse and truly unimaginable. For the next year she spent the majority of her days in bed. Our parents had to hire a teacher to homeschool Alyssa. Her diet was limited to formula for the first few months  because she had an allergic reaction to everything she ate. We found out later that she and I both have Mast Cell Activation Syndrome which is what was causing these allergic responses. The fire department and paramedics would come to our house on a regular basis.  

After a significant number of doctors visits, Alyssa was diagnosed with a form of dysautonomia called POTS (Postural Orthostatic Tachycardia Syndrome). This diagnosis would forever change our lives. Dysautonomia is the dysfunction of the autonomic nervous system. The autonomic nervous system controls the things that our body does without us thinking about them such as heart rate, digestion, blood pressure, kidney function, temperature control, etc. Alyssa’s body couldn’t regulate her heart rate or blood pressure. Her heart rate would sky rocket when she would stand up and her blood pressure would drop which made her dizzy and nauseous. Many people with POTS will faint when they stand up. 

About a year and a half later we were on family vacation and Katie (now 16 years old) got a concussion from falling off of the back of an innertube that was being towed by a boat. This concussion was a trigger for Katie and caused her to start having similar symptoms to her sister. Thankfully by the time Katie started showing symptoms the doctors were easily able to diagnose her. The unfortunate part is that there is no true cure for POTS and many people diagnosed can’t seek the treatment they so desperately need. Compared to others, we are fortunate enough to see some of the best specialists in the country. Many people with POTS faint every time they stand up and are confined to wheelchairs or their bed. 

We hope to raise money that will go directly to Dysautonomia International, which has been a great resource for our family. 

Our friend John Lemkey, will be helping my sister and I to raise money for Dysuatomia International by participating in an endurance challenge. Starting Friday night March 5th, John will run 4 miles, every 4 hours, for a total of 48 hours. This cause holds a special place in John’s heart becasue his sister-in-law also suffers from dysautonomia and POTS.

Please help us raise money to support Dysautonomia International, so that we can continue to spread awareness.  We will be sharing John’s progress on our instagram pages @Chronicillness_strength and @katiehandkrafted throughout the weekend. Even just $1 or 5c per mile can create such a difference in helping the Dysautonomia community.  All Proceeds go directly to Dysautonomia International thanks to the nonprofit feature on go fund me.




More information about Dysautonomia International, Inc.: Dysautonomia International is a 501(c)3 non-profit that advocates for millions of people living with disorders of the autonomic nervous system through research, physician education, public awareness, and patient empowerment programs.