The Bee Foundation 2016 - Year in Review

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2016 YEAR IN REVIEW


2016 Team and Board Members The Bee Foundation was founded by Christine Kondra (Doherty) and her sister, Erin Kreszl (Doherty). The two were inspired by the loving memory of their cousin, Jennifer A. Sedney, who died suddenly from a ruptured brain aneurysm in December 2013. Christine, a previous bio-pharmaceutical director and current chef/owner of Cornerstone BYOB and Artisanal Market, and Erin, an institutional investment advisor and University of Michigan Ross School of Business post-graduate, are dedicated to achieving The Bee Foundation’s mission. The Bee Foundation is supported by a Scientific Advisory Board that consists of leading clinicians and scientists dedicated to neurovascular research in the area of brain aneurysms. The organization is also supported by a dedicated volunteer staff, including Eileen Smith as Chief Operating Officer and Courtney Stern as Chief Marketing Officer. The Bee Foundation’s vision is to be the leading brain aneurysm organization in this country dedicated to preventative research. The organization is actively lobbying on Capitol Hill for increased National Institute of Health (NIH) funding for brain aneurysm research.

2016 Board Members: Christine Kondra (Doherty) Erin Kreszl (Doherty) Michael Kane Alison Sedney J Mocco, MD, MS Stephen McIlwain

2016 Scientific Advisory Board: Dr. Michael Chen (Chicago, IL)

Associate Professor in the Department of Neurological Surgery at Rush University Medical Center

Dr. M. Shazam Hussain (Cleveland, OH)

Head of the Cleveland Clinic Stroke Program & Assistant Professor of Medicine (Neurology) at the Cleveland Clinic Lerner College of Medicine

Dr. J Mocco (New York, NY)

Professor and Vice Chair for Education & Director of the Cerebrovascular Center Department of Neurological Surgery at Mount Sinai Health System

Dr. William Mack (Los Angeles, CA)

Associate Professor of Neurosurgery at the Keck School of Medicine at the University of Southern California

The Bee Foundation

@thebeefoundation

@thebeefoundatio


YOU ARE OUR HEROES The holidays bring mixed emotions for The Bee Foundation community. It’s a season of joy but also a reminder of profound loss that we face each day. Jennifer Sedney, whom we lost three years ago on Christmas Day to a ruptured brain aneurysm, continues to be our shining light inspiring us all to make a difference in this devastating disease. Each one of you has your own inspiration that binds you to this cause....be it an early morning run, a dash of cinnamon, an undiscovered alley, a stunning sunset...priceless memories that undoubtedly bring bittersweet smiles. We would not be here today without all of you. You are our heroes. Thank you for believing that together we can make a difference in this critically underfunded disease. We came together almost three years ago with a need for understanding, a need for acceptance and most importantly a need to make a change because that is what Jenny would have done. Thank you for the continued support and love. Making a much need impact is exactly what we’ve done with your financial support. Two preventative research grants, reflection from the medical community, attention from Congress and NIH, multiple awareness events throughout our region, and countless storytelling from families who have been touched by brain aneurysms. You know the numbers...1 in 50 people have a brain aneurysm...that’s 30,000 people each year that suffer a brain aneurysm rupture. But all it takes is one...one daughter, son, mother, father, sister, brother or friend, to dramatically change the course of your life. We continue to come together knowing that this is not the story of one but the story of many. There is so much more we can do together to save lives by funding this critically underserved disease. It’s simple...fund preventative research and raise awareness, but this requires patience and hope. Two things you have confirmed we have. Do not underestimate the impact you can have in the lives of 30,000 people each year in the prime of their lives. Bee Happy Bee Aware Bee Courageous Bee a Hero. With love,

Courtney, Christine, Erin, and Eileen


TBF FUNDRAISERS

Trivia Night at American University

Glam & Give

Philadelphia LOVE Run

TBF Summer Classic

Philadelphia Marathon


IN THE COMMUNITY

Brain Aneurysm Awareness at Fenway Park

The Joe Niekro Foundation together with The Bee Foundation held a public awareness event on Tuesday, July 26 during the Boston Red Sox vs. Detroit Tigers baseball game at Fenway Park. The event, sponsored by Penumbra, paid tribute to those lost to brain aneurysms, AVM and hemorrhagic stroke and honor survivors, including Pat Drake (shown above), with the aim to increase visibility and awareness of stroke and its impact on patients and their families.

The Cleveland Clinic Brain Aneurysm Awareness 5K Run

The Bee Foundation was a Bronze Sponsor for The Cleveland Clinic’s first Brain Aneurysm Awareness 5K Run in support of patient support and research.

Annual Rush Neurosurgery Nursing Symposium Cerebrovascular Review The Bee Foundation participated in the Rush Neurosurgery Nursing Symposium Cerebrovascular Review in April, promoting awareness among the neurosurgery nursing community about The Bee Foundation and developing ways to better support the medical and patient community. A huge thank you to Dr. Michael Chen and Danielle Zielinkski, APRN for their dedicated support.

A Cerebral Affair Erin Kreszl and Alison Sedney attended the 1st annual “A Cerebral Affair” benefiting The Lisa Colagrossi Foundation and The Joe Niekro Foundation in support of brain aneurysm awareness and support. Congratulations to both Todd Crawford and Natalie Niekro for an amazing and successful night.


SCIENTIFIC ADVISORY BOARD

Dr. Mack of University of Southern California joins The Bee Foundation’s Scientific Advisory Board Dr. William J Mack is the Principal Investigator and Director of the Cerebrovascular Laboratory in the Zilkha Neurogenetic Institute. He has active NIH R01 funding for his research. Dr. Mack’s scientific interests are focused on translational efforts to treat ischemic and hemorrhagic stroke. Laboratory investigations concentrate on the pathophysiology of cerebral ischemia, aneurysmal subarachnoid hemorrhage and inflammatory modulation. Using the information and experience gained in the laboratory, Dr. Mack is working to develop new technologies, techniques, and therapies to directly improve the clinical care administered to stroke patients.

TBF: How did you get involved with The Bee Foundation? Dr. William J Mack: I heard about the great work the Bee Foundation is doing through the other Scientific Advisory Board members. Brain aneurysms are a disease that we deal with daily in our clinical practices. It is important to increase public awareness about the disease. The Bee Foundation leadership is very impressive. It is wonderful to be able to work with a group of intelligent, resourceful people who are so committed to an important cause.

TBF: What makes being a SAB member for The Bee Foundation so important? WJM: Membership on the Scientific Advisory Board provides the opportunity to work with a group of motivated individuals to affect change on a large scale. The foundation has the energy and resources to increase public awareness. The Scientific Advisory Board members can provide clinical guidance and help strengthen the relationships between the foundation and organized neurosurgery, neurology, and neuroradiology. The Scientific Advisory Board members help link the medical side of brain aneurysm management with the advocacy and support side.

TBF: Why do you believe it is important to support The Bee Foundation given their dedication to funding preventive research? WJM: Brain aneurysms are common and rupture can often be fatal. Prevention is the best way to save lives. There are many people who are not well-informed about and the risks of brain aneurysms and the potential consequences of rupture. I think it is important to increase public awareness so that people have a good understanding of the condition.

TBF: What do you believe is the most pressing unmet need in the field of brain aneurysm research and how can private nonprofit organizations contribute? WJM: There are many areas of brain aneurysm research that are pressing and exciting. I believe that genetic/genomic studies may uncover susceptibilities to brain aneurysm formation/rupture that have been previously unknown/undiscovered. This type of research could move the field towards personalized medicine. Research targeting cerebral vasospasm is also important. Vasospasm is a deadly consequence of aneurysmal rupture. Preventing cerebral vasospasm could decrease the incidence of death and disability following subarachnoid hemorrhage.

TBF: I see your areas of interest are numerous. Why did you want to work in the field of brain aneurysms specifically? WJM: Although not the most common cerebrovascular disease (that would be ischemic stroke), patients with subarachnoid hemorrhage are the ones that often spend the most time in our Neuro Critical Care Unit. Often, these patients did not even realize they had a brain aneurysm prior to the rupture. Increasing awareness and knowledge on the parts of the patients/ families may serve to prevent some of these events and help individuals and their families through a very trying time.

To read our full interview with Dr. William J. Mack, visit our blog at www.thebeefoundation.org/blog.


L O B B Y U P D AT E

Ellie’s Law, Calling for Further Brain Aneurysm Research Funding at the National Institute of Neurological Disorders and Stroke, is being Reviewed by the US House of Representatives After a dedicated lobbying effort by The Bee Foundation and The Brain Aneurysm Foundation, supported by Arnold and Porter LLP, HR Bill No. 6185, sponsored by Representative Yvette Clarke (D-NY) and Representative Renee Ellmers (RNC), is being reviewed by the House of Representatives. The Bill calls for the authorization of $5 million per fiscal year from 2017 to 2021 to the National Institute of Neurological Disorders and Stroke. The funds will be available until 2025 to enhance comprehensive research on unruptured intracranial aneurysms. Awareness and research for this deadly condition needs to be an important item on the federal agenda. The cost of losing lives to brain aneurysms is real and measurable – around $138 million per year. Brain aneurysms are more likely to occur in women than in men by a 3 to 2 ratio. Ellie’s Law honors four women who passed away as a result of a brain aneurysm: 14-year-old Ellie Helton, WABC Eyewitness News reporter Lisa Colagrossi, Teresa Anne Lawrence, devoted mother of three, and 27-year-old Jennifer Sedney who passed away on Christmas Day in 2013. Their loving families have now dedicated themselves to advocating for more research funding for brain aneurysms to prevent these tragedies from occurring.

Join Us March 29th for Lobby Day in Washington DC and Make Your Voice Heard. Visit www.thebeefoundation.org to register. HERE IS WHERE WE NEED YOUR HELP: We need to gain further support in the form of additional cosponsors so we can get the bill signed into law. Please call your representative’s DC office, ask to speak with their healthcare staffer, and urge them to sign on as a cosponsor to Ellie’s Law (H.R. 6185) (we will be working with Senators to see Ellie’s law introduced there as well).

Here are some key points we recommend to help the staffer understand the importance:

1. Tell them why this is important to you as a constituent. 2. An estimated 6 million people in the United States have an unruptured brain aneurysm, or 1 in 50 people. 3. The combined lost wages of survivors of brain aneurysm ruptures and their caretakers are approximately $138 million per year. 4. Despite the widespread prevalence of this condition and the high societal cost it imposes on the Nation, the Federal Government only spends approximately $0.83 per year on brain aneurysm research for each person afflicted with a brain aneurysm.


T B F R E S E A R C H G R A N T U P D AT E S

TBF 2016 Preventative Research Grant Award Winner: Dr. Ahmed J. Awad TBF: Why did you get involved in the field of brain aneurysm research? AJA: At the beginning I started in cerebrovascular pathologies including brain aneurysms, arteriovenous malformations, and other pathologies in the brain. However, brain aneurysm research is particularly interesting to me. This disease affects approximately 3% of the population and unfortunately cases are discovered after the rupture of the aneurysm, where patients present with the worst headache of their lives and unfortunately almost 50% die after the rupture of an aneurysm. And the other 50% almost half of those have permanent neurological deficits and morbidity. So it is interesting to me to try to prevent this, and doing more research on this disease will hopefully decrease the mortality and the morbidity.

TBF: The research you received the grant for, it’s Using Genetic Variants to Identify Molecular Pathways Leading to Intracranial Aneurysms Formation in Human: A Pilot Study. AJA: Correct. My research project is a bioinformatics and computational genomics project and this uses the genetic variants in identifying the molecular pathways involved in the formation of brain aneurysms.

TBF: How will your research impact the landscape of preventative brain aneurysm research? AJA: The long term goal in all aneurysm research is to prevent the occurrence of the brain aneurysms and decrease the mortality. More specifically, we have two main goals in our research project. The first one is to identify the molecular pathways that are involved in the formation of the aneurysms, so we might develop a drug that can inhibit such pathways and prevent the formation of aneurysms. Our second goal is to develop a blood biomarker where we can screen people who are at risk of a brain aneurysm and the close family members of those patients with intracranial aneurysms.

TBF: So by identifying a biomarker to screen people, you would be able to identify before rupture if those people have a brain aneurysm AJA: Correct, yes this is the goal. A screening tool is our second goal. Developing the blood biomarkers using the genetic expression of the epigenetic of the brain aneurysms.

TBF: How did you hear about The Bee Foundation and the research grant? AJA: I heard about The Bee Foundation by searching for a foundation that supports brain aneurysm research. And through using social media and web search I noticed that The Bee Foundation has the largest funding for a single grant. And this is something we are interested in in order to support our study. And I applied for that grant and thankfully I got it!

TBF: What needs to be done to better educate primary care providers about the warning signs and risks of brain aneurysms? AJA: Another good question. I believe primary care providers are aware of the signs and symptoms because it is part of our training in medical school and postgraduate education. We know the signs and the symptoms of the intracranial aneurysm rupture, which is generally the worst headache of the patient’s life, increased sensitivity to light, and neck stiffness. However, the important part is the patient – that he/she needs to be aware of these signs and symptoms and if they have or experience these signs and symptoms to immediately present to the closest emergency department.


Results of the TBF 2015 Preventative Research Grant: Dr. Aichi Chien We are excited to announce the results from The Bee Foundation’s 2015 Research Grant awarded to Dr. Aichi Chien, Associate Professor in the Division of Interventional Neuroradiology at UCLA. Dr. Chien has extensive experience with aneurysm clinical research and aneurysm image quantitative analysis, which was the perfect background to qualify her for further research using the TBF grant. The purpose of the research study was to examine prior studies of people who found out they had brain aneurysms before they ruptured. Researchers aimed to find what factors are related to aneurysm growth and rupture in order to better predict the risk of a rupture. Understanding this key information allows the medical community to improve outcomes for those who have identified an unruptured aneurysm. Dr. Chien and her research team had promising results, including their preliminary analysis of aneurysm characteristics in aneurysm blood flow changes over time has been accepted in the 2016 International Stroke Conference (ISC). Through comparing growing aneurysms against stable aneurysms of similar size, Dr. Chien and her team were able to study four cases of changes due to growth and identify parameters which can be useful as predictive factors. The team plans to use this opportunity to exchange ideas with experts from around the world and present the longitudinal aneurysm risk analysis project. The Bee Foundation representatives Christine Kondra and Eileen Smith conducted an onsite at Dr. Chien’s lab in UCLA to meet the full research team and learn more about the progress of the study. Eileen commented, “It was really inspiring to hear from Dr. Chien and her team, and to see the dedication that they have in furthering the understanding of brain aneurysms in the medical community. I was blown away by the sheer brainpower in the room, and by the work ethic and passion that her team so clearly has for their research. The fact that they are making progress that is being recognized by the broader scientific community – evidenced by their acceptance to present at the ISC – is amazing and an indicator of the type of impact we can have in this disease area. Knowing that The Bee Foundation is helping this caliber of team to continue, and to pave the way for really valued research was priceless.”


SHARE YOUR STORY

My Friend, Jill by Kristi Rezendez

Have you ever heard someone laugh so hard they snort? That laugh is what I miss most about my friend and former co-worker Jill Liccioni. This laugh was her every day, multiple times a day, kind of laugh. When something was funny, she would laugh so long after you had stopped, that you felt you needed to start laughing again! Jill was the type of boss that one could only dream of having. The first time I attended our company’s annual meeting, she introduced me to everyone as her friend, not her co-worker. She always told me I reminded her of her younger self, which was one of the greatest compliments I’ve ever received. Not only was she a great boss, but she was a great mom first. She would make up hours by staying late at work so she could attend her kids’ events at school. Jill always had a smile on her face, a bounce in her step, a snort in her laugh, perfectly highlighted hair, a coordinating jacket, and was always reapplying her lip gloss. I admired so much about her and how she lived her life. Jill was taken away too soon, leaving behind her husband, a son in high school, a daughter in college, and too many friends and colleagues to count. Jill was just months away from celebrating her 50th birthday when she suffered a ruptured brain aneurysm while exercising with her husband one Saturday morning. As a perfectly healthy 49 year old, nobody expected her not to show up at work on Monday morning. When I heard the news, I was shocked to learn that something like this took my friend away. I’m not sure I had ever heard of a brain aneurysm until the day I received the news. The fact that this condition can affect anyone regardless of age, race, gender, etc. has really opened my eyes to the need for awareness and research. I have always heard life is short and can be taken away in an instant, but had never experienced it firsthand. My hope and prayer is that through continued research, others will be spared the loss of their Jill.

Get Creative Celebrate the life of someone special touched by brain aneurysms and fundraise for The Bee Foundation. Get Creative – Compete in a Warrior Dash, Host a Movie Marathon, Plan a Mystery Wine Challenge, or Encourage a Local Business to Donate a Portion of their Profits. Visit www.thebeefoundation.org/fundraise for more ideas.


Bonnie’s Story — Symptoms of my Brain Aneurysm Rupture and Life Saving Surgery I was that girl. The girl that thought – if you exercised, had a healthy diet, and took care of yourself physically that nothing could happen. Unfortunately, that wasn’t the case.

4 out of 10 people suffer a ruptured brain aneurysm: And, I am one of them. At 31, I felt as though I was in the best shape of my life until one morning in February 2004. While at the gym exercising on the elliptical machine, I actually felt something pop in my head. I passed out and was rushed to the hospital to find out that I was bleeding in my brain. I have vague memories of ambulance rides and excruciating pain involved in treatment. If it wasn’t for the amazing Dr. Erol Veznedaroglu, his research efforts, and the positive choices I made in life, I would not be here today. I suffered a 7MM brain aneurysm rupture. He performed the coiling procedure via my groin. I recall him saying to me, during my almost 3 weeks in recovery, that it was my level of fitness that saved my life, and my dedication to exercise contributed massively to my survival. I consider myself to be one of the luckiest people in the world for the fact that I survived something of this caliber and do not have any major limiting issues as a result. I guess, it wasn’t my time. When I tell people my story, the response is usually, “Wow- you are lucky to be alive!” or they know of someone who died from an aneurysm. Many ask: “Did you have any symptoms?” The answer is “YES!” Three months prior to the rupture, I had odd feeling headaches, and I never got headaches. I was also experiencing ocular migraines. Lastly, I recall months prior to the incident on a flight home from Aruba feeling vertigo and lightheadedness. ALL of these symptoms are easy to ignore. I chalked it up to stress before the holidays. My personal interest in brain aneurysm research stems not only from a survivor’s stand point, but to help people avoid the pain, suffering and potential long term recovery and difficulties associated with brain aneurysms. Due to research and current treatments, I am fortunate to be a part of the slowly growing trend of patients who have survived without any permanent damage. - Bonnie Weber

Share Your Story Share your story about how brain aneurysms have impacted your life. Inspire others with your shared experience and raise awareness of this little understood disease. Visit www.thebeefoundation.org/category/share-your-story to read more or contribute your story.


FUNDRAISING OPPORTUNITIES

You Shop. Amazon Gives. Amazon donates 0.5% of the price of your eligible AmazonSmile purchases to the The Bee Foundation. AmazonSmile is the same Amazon you know. Same products, same prices, same service. Support The Bee Foundation by starting your shopping at smile.amazon.com.

Autos for Aneurysms Donate your car, boat, truck, RV, Jet Ski or snowmobile to The Bee Foundation and receive a tax deduction. This no cost, no hassle process – available anywhere in the U.S. For more information, vist thebeefoundation.org/ donate-your-car.

Corporate Matching Check with your company’s human resources or community affairs office to inquire about having your gift matched by your employer. Please call (617) 850-2515 or email christine@thebeefoundation.org to get started.

TBF Store Now you can give back by representing the cause in our limited edition TBF Gear. 100% of proceeds support the mission of The Bee Foundation. Check out our custom apparel and limited edition photography items, inspired by Jennifer Sedney.


Get Active — The Power of Peer to Peer Fundraising Nov. 28, 2013, Matt Sedney went for a run with the sister he would lose in 27 days. It was Thanksgiving in Ridgefield, Conn., his first since graduating from Washington College that spring. Jennifer Sedney had gotten into running, and Matt, her younger brother, only sibling and a former Division III soccer player, was following her lead. Along with their father, Len, they had signed up for the city’s Turkey Trot. They were assigned sequential bib numbers for the 5K run, Nos. 500 to 502. They finished less than 2 1/2 minutes apart, the 62-year-old Len in first and Jennifer just 96 seconds behind Matt. With the morning chill below freezing, they had kept close that fall day. Matt’s memory of the race still warms him. The next month, Jennifer complained of a terrible headache. She soon recovered, feeling well enough to go shopping and wrap presents with her mother, Alison. Then she collapsed. On Christmas Day, she died of a cerebral hemorrhage from a ruptured subarachnoid aneurysm. Jennifer was 27. Matt began to reach out to friends. He texted some. He called Jack Taylor. “I don’t know why he did, but that’s a moment that I’ll really never forget,” Taylor said. “I just remember the phone call. It was a very powerful moment.” Their diverging lives have separated them since their days at Washington College, Taylor returning to Baltimore to work in real estate and Matt living in New York for his finance job. Jennifer will bring them together again this weekend. On Saturday, October 22nd, the 25-year-olds ran alongside each other in the Baltimore Marathon in honor of Jennifer and in support of The Bee Foundation. Taylor already has raised nearly $2,000 to spread awareness of and raising money for preventative research into brain aneurysms. It was an exhausting and tremendous day with an important friend. The best thing Taylor did for Sedney after his sister’s death was tell him, “I’m here for you and I’m here to talk with you.” Matt ran that Saturday morning farther than he ever has, and he needed someone to lean on. Taylor assured Sedney before the race that he will be there, running with him, step for step.

Visit our fundraising page to Get Active and fundraise in honor of a loved one as Jack has done for both Jenny and Matt at www.thebeefoundation.org/fundraise.


2016 HONEY BASH GALA

THANK YOU so much to all who shared in the amazing evening of September 17th, and who donated to the event. (And to those of you who missed it, we hope to see you next year!) Our third annual gala raised over $150,000—our highest yet—and we couldn’t be more grateful to everyone who made it happen. Close to 200 supporters gathered at the Chemical Heritage Foundation in Old City, enjoyed awesome food from Garces Events and Cornerstone, spirits from Cisco Brewers, and danced to tunes spun by Blue Route Entertainment. The photo booth (complete with Bee props) was a hit, emcee Joe DeCamara from 97.5 The Fanatic kept the evening lively, and the live auction items—in particular the Nantucket getaway, South African safari, and Beyonce concert, which 20 lucky concert-goers watched from the Eagles suite—got the crowd as excited as we’ve ever seen. The night’s speakers inspired and informed: This year’s grant recipient Dr. Ahmed Awad told us about his search for a biomarker in people who have aneurysms, that they might be identified, and rupture prevented. Sally Freedman, our Survivor of Honor, captured us with her story about the successful detection and treatment of her aneurysm before it ruptured. And Dr. J Mocco, from the Department of Neurological Surgery at Mount Sinai and the Bee Foundation’s Chief Medical Officer, encouraged everyone that night to donate and help fund vital research. He mentioned that fifteen years ago, a grant is what really gave him his start, underlying the potential that can be unlocked when the support is there.


S A V E T H E D AT E FOR THE 2017

Honey Bash Gala SEPTEMBER 16TH

C I R A C E N T R E | P H I L A D E L P H I A , PA

formal invitation to follow THANK YOU TO OUR SPONSORS AND BENEFACTORS: NBP

National Benefit Partners

Association of Corporate Arts Curators (Emily A. Nixon) Connelly Foundation The Huisking Foundation Frank & Joyce Doherty Mickey & Angie Faulk

William Penn Foundation Steve & Carissa McIlwain Jay & Peggy Doherty Michael & Julia Puchtler Richard & Julie Schechter Len & Alison Sedney


BEE A HERO WE NEED YOU!

Too often the signs go unnoticed and we lose those we love in the prime of their lives. Research and Awareness is critical to fight this disease and imagine a world where brain aneurysms can be PREVENTED. The Bee Foundation has raised over $500K since 2014 to raise awareness and fund preventative research. Donate today and join us in the fight against brain aneurysms. You cannot underestimate the power your support can have in people’s lives, THANK YOU!

@thebeefoundation

@thebeefoundatio

give.classy.org/beeahero The Bee Foundation

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