Please take this poll about currently approved orthostatic hypotension (OH) treatment options.  It is a one question poll that will take less than one minute to complete:

Chelsea Therapeutics Chief Medical Officer Bill Schwieterman, MD was interviewed at the 2013 Parkinson’s Unity Walk.  The walk took place on April 27 in New York City’s Central Park.  In this interview, Dr. Schwieterman discusses neurogenic orthostatic hypotension in the Parkinson’s population.

Watch this video about neurogenic orthostatic hypotension!

What Happens When You Stand Up

Neurogenic OH is defined as a significant drop in blood pressure (≥20 mmHg systolic or ≥10 mmHg diastolic) within 3 minutes of standing up that is associated with an underlying neurological cause.

Neurogenic orthostatic hypotension (neurogenic OH or nOH) is a condition that may cause people with an existing neurologic disease to experience symptoms of dizziness, lightheadedness, and/or fainting when going from lying down or sitting to standing up. Some people may even experience symptoms while they are sitting up. For many people with neurogenic OH, these symptoms are persistent and may interfere with activities that require standing upright or walking.

Here is what happens upon standing:

Standing up when your nervous system is healthy

When you don’t have neurogenic OH and you stand up, your body’s nervous system automatically sends signals to your blood vessels to constrict, or tighten up. It also signals your heart to beat faster for a second or two. These signals keep blood from pooling in your legs due to the force of gravity that occurs upon standing and ensure that the supply of blood to your brain remains adequate. This means your blood pressure stays normal after you stand up and you can go about your daily activities without concern.

Standing up with neurogenic OH

When you have neurogenic OH and stand up, your body’s normal nervous system signaling does not work properly. Your blood vessels do not get the signal to constrict. As a result, gravity causes blood to pool in your legs and your blood pressure to drop dramatically. This means there is less blood circulating back to your heart which is also not signaled to beat faster to compensate for having less blood to pump.  This results in your brain not getting enough blood and oxygen.

After standing, when your heart does not receive enough blood to pump to your brain, you may experience symptoms of neurogenic OH such as dizziness, lightheadedness, fatigue, blurred vision, or even blacking out.

The Treat Neurogenic OH Now Coalition proudly supported the April 27, 2013 Parkinson’s Unity Walk (PUW 2013).  The event took

The Treat Neurogenic OH Now Booth

place on a beautiful, sunny Spring day in New York City’s Central Park.  Chelsea Therapeutics manned the booth with the help of several of its employees and consultants.

The event was truly a great experience.

The Parkinson’s Unity Walk event officially started at 9:00 a.m. and went until 2:00 p.m.  However, participants started stopping by our booth well before the official beginning of the event and the traffic didn’t stop until the very end.  Throughout the day we were able to interact with hundreds of people affected by Parkinson’s disease either as a patient, caregiver, family member or advocates.  The most impressive part of the entire event was the strong passion demonstrated by all of the PUW participants to advocate and create awareness for Parkinson’s disease.  The desire for knowledge and information was easy to see.

Symptomatic Neurogenic OH and PUW2013 Participants

As we anticipated, based on the literature which states as many as 18% of PD patients suffer from symptomatic neurogenic orthostatic hypotension, many of our booth visitors were familiar with neurogenic orthostatic hypotension.  Others were not aware of the name, but claimed to often suffer from intense moments of dizziness, lightheadedness, blurred vision and other symptoms of neurogenic OH.   We handed out a large amount of Treat NOH Now awareness wristbands, educational brochures, symptom assessment questionnaires, and advocacy talking points.  At the end of the day, 43 new advocates had agreed to join the Treat Neurogenic OH Coalition.  A few people even joined the Coalition on their mobile phone by texting DIZZY to 22828.

Thank you to the Parkinson’s Unity Walk organizers for allowing us to participate!

Treat Neurogenic OH Now Advocacy Day

On October 3, 2012, Treat Neurogenic OH Now took to Capitol Hill to meet with several Senate and House Congressional offices. Patients suffering from symptoms of neurogenic orthostatic hypotension (neurogenic OH or nOH), caregivers, health care providers and neurogenic OH patient advocates met with members of Congress, to share personal details of how neurogenic OH negatively impacts one’s quality of life and to request that Congress contact the FDA to urge approval of new Nnurogenic OH treatments.
During the Neurogenic OH Advocacy Day the advocates met with the following Senators and Representatives:

• Senators — Kay Bailey Hutchison (R-TX) and John Cornyn (R-TX); Carl Levin (D-MI) and Debbie Ann Stabenow (D-MI); Marco Rubio (R-FL) and Bill Nelson (D-FL); Rob Portman (R-OH) and Sherrod Brown (D-OH); John Kyl (R-AZ) and John McCain (R-AZ); Lindsey Graham (R-SC) and Jim DeMint (R-SC); Richard Burr (R-NC) and Kay Hagan (D-NC)

• Representatives — Dr. Michael Burgess (R-TX), Sandy Levin (D-MI), Ted Deutch (D-FL), Steve Stivers (R-OH), Ron Barber (D-AZ), Trey Gowdy (R-SC), Larry Kissell (D-NC)

Please help maximize the efforts made on October 3 to advocate for new neurogenic OH treatments — Act Now using the easy-to-use tool to send letters to the FDA and your members of Congress telling them about the disabling symptoms of neurogenic orthostatic hypotension.
View the photo gallery from Treat NOH Now Advocacy Day »

Today, President Barak Obama signed into law The Food and Drug Administration Safety and Innovation Act (FDASIA), S. 3187, bipartisan legislation that should help facilitate the development of lifesaving treatments for 30 million Americans afflicted with rare diseases, potentially including >100,000 with symptomatic neurogenic orthostatic hypotension. FDASIA contains elements designed to improve the approval process for orphan drugs (drugs targeting rare diseases with fewer than 200,000 U.S. patients.) FDASIA should lead to more orphan drugs being granted the “Accelerated Approval” pathway and more consultation by the FDA of rare disease experts.

Learn about the need for new treatment options for neurogenic orthostatic hypotension.

The Treat Neurogenic OH Treatment Coalition launched on April 27, 2012 to assist patients, caregivers, healthcare providers and advocacy groups affected by neurogenic orthostatic hypotension (neurogenic OH or nOH) to advocate for more treatment options. Neurogenic OH is a rare condition affecting fewer than 180,000 Americans and is defined by a >20mmHg drop in systolic blood pressure within 3 minutes of standing. Characteristic symptoms occur shortly after standing and include dizziness, lightheadedness,blurred vision, trouble concentrating, feeling faint, blacking out, and fainting. Patients with symptomatic neurogenic OH can be at increased risk for falls and injuries.

In the United States, there is only one FDA approved drug for symptomatic neurogenic orthostatic hypotension and it is facing possible withdrawal from the market if it does not successfully complete two post-marketing studies in 2014. Another medication is facing potentially long delays in approval. As such, it is possible by the middle of 2014 for no approved drugs to be available in the US. The Treat Neurogenic OH Now Coalition provides tools to allow those affected by nOH to communicate their urgent unmet medical need to the FDA and Congress.