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Nicolas Cugno's Fundraiser:

POTS "A Salt" Team

Nicolas' Photo

BENEFITING: Dysautonomia International

ORGANIZER: Aaron

EVENT: 2017 POTS Walk 5K Race

EVENT DATE: May 06, 2017

Nicolas Cugno

THE STORY:

Aaron DeRan wrote -

We're participating in this fundraiser because after years of doctors visits due to unexplained and often debilitating symptoms, Elisha was diagnosed with POTS at the Mayo Clinic in Arizona. The cause of her POTS isn't fully understood, though she was also diagnosed with a connective tissue disorder called Ehlers-Danlos Syndrome, which is commonly seen in POTS patients. POTS has largely contributed to her health problems and has greatly impacted her life in the last several years.

What is POTS?

POTS is the acronym for Postural Orthostatic Tachycardia Syndrome, and is a form of dysautonomia. In people with POTS, blood flows abnormally throughout the body, resulting in trouble regulating systems of the autonomic nervous system. The autonomic nervous system is the part of the nervous system that controls involuntary functions such as blood pressure, heart rate, digestion, body temperature, kidney function, dilation and constriction of the pupils, and more. Signs and symptoms of POTS can affect almost every bodily system, often resulting in a wide array of presentations. Because of irregular blood flow, patients with POTS often experience orthostatic intolerance, resulting in pre-syncope (dizziness) upon moving to an upright position, especially when standing. In some cases, this may result in syncope (fainting). A person with POTS often requires three times more energy to stand than a person without the condition. Small fiber neuropathy and an abnormal fight or flight response are also common in POTS patients.

Physicians who specialize in POTS have compared the functional impairment seen in POTS patients to that in Congestive Heart Failure (CHF) and Chronic Obstructive Pulmonary Disease (COPD). There isn’t a ‘one size fits all’ treatment option. Patients often have hypovolemia (low blood volume), therefore POTS patients are encouraged to drink a lot of fluids  and increase their daily sodium intake sometimes 3-4 times the normal daily value. Some patients benefit from certain medications, such as fludrocortisone to increase blood volume and beta-blockers to help manage heart rate and blood pressure. Exercises programs may help improve some function, but is often an unrealistic treatment option for many patients due to the dangers and severity of symptoms.

Race Details:

Run along the scenic Mystic River, the 2017 POTS Walk & 5K Race will start and end at McGlynn Middle School in Medford, MA.  The race is chip timed and sanctioned by USATF. Participants are welcome to join us after the race for entertainment and refreshments. Proceeds from this event will benefit Dysautonomia International in the support of POTS research.  

Join our event page to stay apprised of updates 

https://www.facebook.com/events/354194668288826/

Fundraising:

Dysautonomia International, Inc. is a 501(c)(3) non-profit organization based in the United States. Your donation supports POTS research, training programs for doctors, nurses and other medical professionals, patient empowerment programs, and programs that raise public awareness about POTS and other forms of dysautonomia.  

Cost:

The registration fee is $30 per person.  Registration includes a free t-shirt and goody bag for the first 500 registrants.  All participants will be entered in our raffle for a chance to win some incredible prizes donated from our sponsor.  Everyone is encouraged to join us for refreshments and entertainment after the race.  Please register early.

If you are walking and would like to bring young children, they are more than welcome.  They do not require registration and will not receive registration materials, bibs, or T-shirts.

Schedule:

The race will start promptly at 10am.  Registration and bib pick-up will open at 8am and close at 9:30am.  Look for us under the windmill behind McGlynn Middle School.  Please plan to arrive early to pick up your bib.

A post-race celebration including refreshments and entertainment will be provided until noon.  

Transportation and Parking:

The course is accessible by T using the Wellington station.  Several buses also service the area.  Plenty of free parking is available at Hormel Stadium.

Safety:

This race is sanctioned by USATF.  Runners are not permitted to have strollers, roller skates, skateboards, or bicycles on the race course.  Walkers may have strollers but will be asked to line up at the back of the field.

To make the course more accessible to POTS patients, we will be marking off several shorter distances along the race course.  Those that are unable to walk the entire course are encouraged to set their own goal and walk as much as they are physically able.  

 

DONATE

To This Fundraiser

$55

MONEY RAISED
  • Anonymous

    $30

  • Starr Ruiz

     

  •  
  •  
  •  

The Team: $3,110 TOTAL RAISED SO FAR

Fundraiser Title

Aaron DeRan

Amount Raised

$2,565

 

51% Raised of $5,000 Goal

Fundraiser Title

Elisha Clemons DeRan

Amount Raised

$490

Fundraiser Title

Nicolas Cugno

Amount Raised

$55

Donor Comments

Starr Ruiz

Starr Ruiz

1 year ago

Anonymous

ANONYMOUS

DONATION: $30

1 year ago