Living a Legacy

I receive hundreds of comments every week on the foundation website, www.joeniekrofoundation.org, and as I hear about the number of people effected by aneurysms, I become more astonished at the lack of research being done within this area. Just yesterday I received a message from a young woman who had just lost her 33 year old brother. Not only is her family completely devastated, but confused on why him, what caused the aneurysm and why it wasn’t detected sooner? These are all the questions that I ask everyday and why I am committed to finding a detection method to alert others of these tragic killers we call aneurysms. Life is precious and can be taken at any moment, so treasure each and every day, and never stop to give thanks! My motto – “Life each day creating the legacy you want others to remember you by.” If I can do to this and make every second count, my mission is accomplished. God bless!


2 Responses to “Living a Legacy”

  1. June 28, 2009 at 6:14 am

    Dear Natalie,

    Loch and I were up writing a grant to the National Institute of Neurological Diseases tonight and I went to your site to see one of your statistics and came across your blog. Not sure yet what a blog is or twitter, I am getting too old, though you can tell your thoughts come from the heart. I look forward to meeting you in person at your event in July. It is too bad that Loch cannot come but he is an invited speaker in Australia and could not get out of it. You seem to be doing an amazing job raising awareness for research to brain aneurysm. I would love ideas on how you have done it. Though we have raised some money from investors and we continue to move forward, it has been very difficult and we aren’t asking for charity, we are offering some of our company back to investors. If our product works, the investors will get anywhere from 20 – 30x their investment as well as help solve a devastating secondary injury following the ruptured brain aneurysm. The State of New Jersey last week cut funding to Life Sciences company because of budget issues… Anyway, any suggestions are welcome.

    Also, please find below a letter that I wrote today to Tom Burton at The Wall Street Journal. He may also be someone that could increase the awareness for brain aneurysms and the Joe Niekro Foundation since he has an interest in Brain Stories. – Anyway, congratulations on all of your hard work and enduring hours. Best Regards, Brian

    Dear Mr. Burton,
    I read your article on Progesterone and Brain injury with interest on June23rd. Also, while searching for your email information, I noticed several other articles on brain injury, and department of defense issues regarding PolyHeme and TBI. We are on a Quest For A Cure!…………..and we need your help! I know that “Cure” and “Stroke” cause the eyebrows of any educated medical news reporter to go up in disbelief, though if you would read on, I believe that I can make a case, as to why you may believe us.
    I am the President and CEO of Edge Therapeutics. We are developing 3 orphan drugs to improve patient outcomes after brain injury, e.g. ruptured brain aneurysm, Severe TBI – 2,000 soldiers and signature injury in the Global War on Terror, Sub-Dural Hematoma – e.g. Natasha Richardson. My partner, R. Loch Macdonald, MD, PhD , a scientist, clinical researcher, and active neurosurgeon, is widely considered the expert in the world on subarachnoid hemorrhage (SAH). According to Scopus, (www.scopus.com) the world’s largest abstract and citation database of peer-reviewed medical literature, Dr. Macdonald ranks 4th in the world in peer reviewed, published articles on Subarachnoid Hemorrhage, a type of stroke, his publications on SAH have been sited thousands of times by other researchers. Our Scientific Advisors included top neurocritical care doctors from Cleveland Clinic, UCLA, U. of Chicago, U. of Virginia, and Columbia Presbyterian Hospital. Two of our expert scientific advisors , Dr. Neal Kassell and Dr. Stephan Mayer are ranked #1 and #8 on publications on SAH. These 3 physicians are true pioneers bring reseach in brain injury forward over the last 30 years.

    Here is the potential News Story!

    11 million people in the United States have unruptured brain aneurysms, the vast majority do not known it. Ticking Time Bombs! Every 8 minutes, one ruptures. Every 2 minutes in the U.S., a person is rushed to a hospital, the result of a severe TBI, the result of a jolt to the head. Traumatic and blast related brain injury is the “Signature Injury” in the Global War On Terror. These neurological emergencies often cause blood to rush into the fluid around the brain. Neurosurgeons call this subarachnoid hemorrhage (SAH). SAH causes vasospasm, a serious, life threatening condition that develops days after the injury and can last for up to 14 days. Vasospasm, a type of stroke, is the leading cause of permanent brain damage and death following SAH. Vasospasm causes brain arteries to constrict and sometimes close completely, thus starving the injured brain and brain neurons of oxygen causing permanent brain damage and death. The average age of a person that suffers a ruptured brain aneurysm is 51, and of 10 people that have a ruptured brain injury, 8-9 of them will either die or have permanent brain damage. A cure for vasospasm would solve a large unmet medical need to reduce permanent brain damage or death after brain injury.

    The problem with the current FDA approved treatment, nimodipine, which is given orally 6 times a day for 21 days is that it is minimally effective because the doses that can be tolerated by patients are too low to totally prevent vasospasm. Higher doses that might prevent vasospasm result in dropping of blood pressure and are unsafe. Despite preventive care with nimodipine in all patients with ruptured brain aneurysms and improvement in care, 67% of patients still develop vasospasm.
    Edge has invented a new product, NimoGel to cure vasospasm and improve patient outcomes. Like the biological agents that are being used in cancer treatment that attack only a single type of cell – leaving the rest of the body untouched, scientific evidence to prevent vasospasm points to highly localized, site specific treatment. The active in NimoGel is the same nimodipine that is standard of care. Unlike current treatment, NimoGel is delivered directly to the site in the brain where it is needed … and released over 14 days … and is biodegradable so it disappears when its work is done. NimoGel delivers very high concentrations of nimodipine to the site at risk for vasospasm using 80% less drug to avoid side effects. NimoGel can be delivered directly to the brain while securing the bleeding artery during surgery or through minimally invasive methods in patients not undergoing surgery. NimoGel is the result of over 20 years of research by Edge co-founder R. Loch Macdonald, MD, PhD.

    And here is the other side of the News Story!

    Edge is seeking about $1,000,000 in funding to bring NimoGel into Phase 2 human trials. Since we are only reformulating an FDA-approved drug, we ONLY have to show that the new route of delivery & dosage is safe, which are two small animal studies. The experts in the world beleive NimoGel will work better than existing therapy if we can show that the new formulation is safe. We have secured funding from 2 investors though due to the financial crisis, funding is difficult and time consuming. Angel investors are not investing in early stage life science companies in fear of being crushed in their share of the investment by follow-on funding by Venture Capital Groups. Many Venture Capital Groups view $1,000,000 as too small of an investment and are struggling themselves so are only putting money back into their currently invested funds.

    Where can you help? A story about brain injury and newer treatments in the Wall Street Journal would tremendously increase awareness of NimoGel. We know that Private Investors and Select Venture Firms will be interested, but we are a small company and getting the word out about our potential cure is time consuming. As you know, Time is brain! In the time it took me to write this email…..4 people suffered a ruptured brain aneurysm in the U.S. and 15 people were rushed to the hospital with severe brain damage. And probably, a soldier or 2 suffered brain injury the result of an improvised explosive device.

    We hope that you will consider joining our Quest For A Cure! I have attached our Executive Summary for more information. (See the sad story below from the LA Times – May 9th regarding 44y.o. NBC Executive- died from ruptured brain aneurysm)


    Brian Leuthner

    Brian Leuthner, President & CEO
    Edge Therapeutics, Inc.
    NJIT- Enterprise Development Center Technology Incubator
    211 Warren Street
    Newark, NJ 07103
    908-531-4566 (c)

  2. July 2, 2009 at 4:30 am

    Brian, thank you for sharing this very useful and informative information. I too look forward to meeting you at The Knuckle Ball and learn more about your company, projects and future plans. It is this type of information that is pertinent we get out to the public, to make a difference within the neurological arena. Thank you so much for sharing your information.

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