2017 YEAR IN REVIEW
2017 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. 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 Eileen Smith as Chief Operating Officer, Courtney Stern as Chief Marketing Officer, and Marla Brown as Chief Administrative Officer. The Bee Foundation’s vision is to be the leading brain aneurysm organization in this country dedicated to preventative research. Since 2014, The Bee Foundation has raised over $700,000 and funded four preventative research grants to UCLA, Mount Sinai, Massachusetts General Hospital and the Barrow Neurological Institute. The organization is actively lobbying on Capitol Hill for increased National Institute of Health (NIH) funding for brain aneurysm research.
2017 Team Members:
Marla Brown Christine Kondra (Doherty) Erin Kreszl (Doherty) Eileen Smith Courtney Stern
2017 Board Members:
Christine Kondra (Doherty) Erin Kreszl (Doherty) Michael Kane Alison Sedney J Mocco, MD, MS Stephen McIlwain
2017 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
BEE COURAGEOUS THE DEVASTATION OF BRAIN ANEURYSMS hit us again as we looked at the tables during this year’s Honey Bash Gala. At each table setting, we had shared the stories of ten people in the prime of their lives impacted by brain aneurysms – some who had won the battle, many who had not, all of whom had created growing circles of family, friends, relatives and colleagues who had now been impacted by something that most were completely unaware of before. It hurts to look at the stories, but with each we see a unique beacon of hope. As we watched people reading them, we were reminded that it is through those stories, and through the courage of those who are joining us in this mission, that we can make a difference with this devastating condition. And we believe we are. In less than four years, through your support, we’ve accomplished so much. • Over $700,000 raised through ongoing sponsorships, support and fundraising activities; $175,000 from this year’s Honey Bash alone, the highest the event has ever garnered. • Four grants awarded for promising research into the prevention and treatment of brain aneurysms: to the University of California, Mount Sinai, Massachusetts General, and the Barrow Neurological Institute. • Joined other brain aneurysm advocates for our second successful lobby day on Capitol Hill, hosted a press conference with Congressman Patrick Meehan and brain aneurysm survivors, and attended a follow-up Congressional briefing to further educate lawmakers about the risks and impacts of brain aneurysms and the need for funding. • Obtained additional support from an expanding group of lawmakers for Ellie’s Law, which would authorize $5 million each fiscal year, for five years, to the National Institute of Neurological Disorders and Stroke for research on unruptured intracranial aneurysms. • Welcomed additional, courageous individuals affected by this condition to our extended “family” of supporters who are holding fundraisers across the country: Sally Freedman, Mary Brewer, the Chi Psi fraternity at George Mason University, Jack Taylor, and Alicia Paramo-Dionne – to name just a few. Remember the numbers…1 in 50 Americans has a brain aneurysm, 30,000 of whom will experience a potentially fatal rupture each year. But remember too, that “he who is not courageous enough to take risks will accomplish nothing in life.” With your help, support, and most importantly, the courage to face the facts and the commitment to change them, we can save lives. Thank you for your continued support. With Love, The Bee Foundation Team - Courtney, Marla, Christine, Erin & Eileen The Bee Foundation Board of Directors – Christine, Erin, Michael, Alison, J & Steve
TBF FUNDRAISERS # B E E C O U R A G E O U S 4 B R A I N A N E U RY S M S
HEADSTANDS FOR MALLORY
SPREAD THE LOVE
On August 25, 2016, Mallory Brewer, a gymnast from the University of Pittsburgh, passed away after suffering a fatal brain aneurysm. In honor of Mallory’s birthday on Friday, June 16th, 2017, supporters posted pictures of themselves doing headstands and raised over $1,000 for research and awareness. Mary and her family look forward to continuing to do this each year on Mallory’s birthday in honor of her legacy.
In memory of Travis Charles Valentine, the George Mason chapter of the Chi Psi Fraternity hosted a week long philanthropy event in support of Brain Aneurysm Awareness & Research. Travis, of York, PA passed away from a ruptured brain aneurysm on February 14th, 2017 at the age of 33. The week of fundraising included a digital appeal, dodgeball tournament, T-shirt sales, and a fun “Pie a Chi Psi” event raising over $2,500.
#headstandformallory
#spreadthelove4brainaneurysms
BEE WED 4 BRAIN ANEURYSMS
CHILI COOKOFF TRIBUTE
Brain Aneurysm survivor Sally Freedman and fiance Christopher Skoog are raising awareness of brain aneurysms in preparation of their upcoming wedding. In lieu of gifts, they have offered donations to The Bee Foundation on their gift registry, raising $3,500 to date.
Alicia Paramo-Dionne and her husband hosted a Chilimpiad in honor of their friend, Kristen Busha, who died suddenly from a brain aneurysm, leaving behind a husband and two sons. Says Alicia: “I just knew we had to do something to raise awareness and am thankful to have raised over $1,000 for The Bee Foundation.”
#beewed4brainaneurysms
Contact us at info@thebeefoundation to Bee Courageous and start your own fundraiser today!
SUMMER CLASSIC
SUMMER CLASSIC FOR BRAIN ANEURYSM AWARENESS
The Bee Foundation hosted their Second Annual Summer Golf Classic on June 26th at Scotland Run Golf Club. The sold out event raised over $20,000 in support of Brain Aneurysm Awareness and Research. Seventy-two golfers gathered on a gorgeous June day, perfect for hitting the greens in support of a great cause - 18 holes were followed by lunch, cocktails, and the annual award ceremony featuring a viewing of the 2016 Honey Bash Highlights video. We were so thankful to our 2017 sponsors who made the day possible. “We feel incredibly privileged to work with The Bee Foundation. We view the research that they are funding and the awareness that they are bringing to the field as critically important,” comments Mark Stevens from Hartford Funds, the Summer Classic Platinum Title sponsor. A representative from CDW, a gold sponsor of the event, commented that “CDW was incredibly honored to partner with The Bee Foundation to drive awareness of and raise funding for brain aneurysm research. At CDW, we don’t just invest in the success of our customers, we also invest in the success of our community and The Bee Foundation has provided a great opportunity to get involved and continue to give back.” . The Bee Foundation would like to recognize and thank all of this year’s generous sponsors. We look forward to another successful event in 2018!
NBP
National Benefit Partners
SCIENTIFIC ADVISORY BOARD
Interview with Dr. J Mocco Chief Medical Officer, Board Member & Scientific Advisory Board Member TBF: What is a brain aneurysm? Dr. Mocco: A brain aneurysm is a small weakening that develops in one of the arteries that brings blood to the brain. It is a little bubble that forms on the side of the wall of the blood vessel. Having the aneurysm in and of itself is not the problem, the problem is that some aneurysms rupture or pop and bleed in the area around the brain which can be quite devastating.
TBF: How many people have an aneurysm? Dr. Mocco: About 2, and some estimate as high as 6-8% of people, have a brain aneurysm. So, it could be about as high as 1 in 20 people who may have a brain aneurysm of some degree. Now, not all of them are rupturing and in fact many of them don’t. The key is for us to do our very best job to identify those that might rupture versus those that won’t and then figure out how to safely treat them with a risk that’s less than the risk of the rupture itself.
TBF: What is the risk of not treating a brain aneurysm? Dr. Mocco: The concerning thing is that if an aneurysm does rupture, somewhere between 20 and 30% of people don’t survive, and of those that do survive about half of them have a significant disability. This is why when we believe an aneurysm presents a significant risk of bleeding we do like to treat it before it ruptures. Now that is not to say that when an aneurysm ruptures all is lost. In fact, there are many aneurysm rupture survivors who go on to make wonderful recoveries after they suffer a ruptured aneurysm. But, certainly the situation is much more grave if they are treated after the aneurysm has bled versus before the aneurysm has bled.
TBF: Who is at risk of developing a brain aneurysm? Dr. Mocco: We do not know exactly what causes brain aneurysms. We do know they happen in women much more than in men. We also know that smokers get aneurysms much more commonly than non-smokers. Furthermore, if you have a brain aneurysm and you are a smoker there is data to suggest that you are at high risk for that aneurysm to rupture and potentially, if the aneurysm is treated, for it to come back. So in general, although this is not new to many people, we know that smoking is very bad and in particular bad for brain aneurysms. But otherwise we don’t know in detail the reason why they form, although there is a lot of great, exciting research looking into these aspects. The important thing is that if someone has an aneurysm and it appears to be at high risk of bleeding that we get it treated before it does rupture. There lies the key because the risk of a major complication from treating a brain aneurysm before it bleeds is typically much less than the risk of a bad outcome once an aneurysm has bled. And this is why for certain patients we often recommend treatment before a patient gets into trouble with a bleeding aneurysm. This is why focusing on preventing brain aneurysms is so important.
TBF: Why are you excited to be part of The Bee Foundation? Dr. Mocco: The work that The Bee Foundation is doing is of incredible importance and that’s for two very important reasons. Most importantly it is getting the word out about this devastating disease. There are very few diseases that can so dramatically and tremendously alter an otherwise young, healthy, asymptomatic person’s life. And what’s also incredible about this disease is that if we treat it correctly and if we can recover someone through the process they then can go on to live a wonderful full life with a high degree of functionality and therefore the best thing that we can do is get the word out to people so they know about this risk and they also recognize that if they are suffering a sudden severe new headache, the “worst headache of their life”, something different than the typical headache, they should consider getting evaluated or speak to a doctor to determine if they have an aneurysm. Furthermore, The Bee Foundation is supporting and funding incredibly critical research so that at some point in the future people can receive better identification and treatments than is currently available. It is only with those kinds of efforts that we can hope that the future is better than today and that is why I think The Bee Foundation is of incredible importance to the community and am proud to be part of the organization.
IN THE SCIENTIFIC COMMUNITY
Society of NeuroInterventional Surgery (SNIS) 14th Annual Meeting Christine Kondra and Marla Brown from The Bee Foundation attended the SNIS 14th Annual Meeting this year, connecting with the brain aneurysm medical community for the third consecutive year. This is a great opportunity to support the NeuroInterventional Medical and Corporate Community with patient perspectives on the lasting impacts of this devastating disease. We are so thankful to SNIS and our Scientific Advisory Board who are critical to setting our long term research strategy and ensuring quality applicants to our TBF Preventative Research Grant Applications.
UP NEXT: 2018 AANS/CNS Joint Cerebrovascular Section Annual Meeting, January 22-23, Los Angeles, CA SNIS 15th Annual Meeting, July 23-27, San Francisco, CA
The Cleveland Clinic Brain Aneurysm Awareness 5K Run The Bee Foundation was a Bronze Sponsor for The Cleveland Clinic’s second Brain Aneurysm Awareness 5K Run in support of patient support and research.
2017 RESEARCH GRANTS In 2017, The Bee Foundation awarded two Brain Aneurysm Research Grants: one to Jennifer Kim, a Neurocritical Care Fellow at Mass General Hospital, and one to Justin Mascitelli, Cerebrovascular Fellow at the Barrow Neurological Institute in Phoenix. We spoke with both to learn more about their research projects.
Dr. Justin Mascitelli TBF: Dr. Mascitelli, tell us a little about yourself. JM: I was born and raised in New York City, attended the University of Pennsylvania for undergrad, Weill Cornell for medical school, Mount Sinai for Neurosurgery Residency and Endovascular Fellowship, and am currently at the Barrow Neurological Institute in Phoenix for a Cerebrovascular Fellowship.
TBF: Tell us a little about the research project for which you received the grant. JM: The name of the project is ‘A multicenter, prospective registry of wide-neck intracranial aneurysms treated by both microsurgical and endovascular techniques.’
TBF: And put in layman’s terms? JM: In layman’s terms, the study looks at the merits of different approaches to treating a particular form of aneurysm – the wide-neck aneurysm. The decision to treat a ruptured intracranial aneurysm (IA) with microsurgical clipping (MC) or endovascular therapy (EVT) has been debated for nearly two decades. The primary study on this, done back in 2002, pointed to EVT as having the best outcomes for ruptured IAs in terms of improved rates of both mortality and dependency, so that treatment approach has seen an increase both in the U.S. and globally. However, there’s a difference in how the two types of aneurysms respond. Wide-neck IAs are more difficult to treat with EVT than are narrow-neck ones; they may present a higher risk and usually require additional techniques such as balloon-assisted coiling (BAC), stent-assisted coiling (SAC), flow diversion (FD), or the use of emerging technologies such as intravascular devices or parent vessel support devices. These additional techniques increase the risk of thromboembolic complications during the procedure and, in certain cases, require the patient to be on dual anti-platelet therapy during the acute subarachnoid hemorrhage (SAH) period. There is a paucity of literature addressing the topic of ruptured wide-neck aneurysms and, while we believe it is worthwhile to study each treatment approach and the outcomes, the current “gold standard” for study methodology, prospective randomized trials, has many drawbacks. Our study involves creating a multicenter, prospective registry, involving both ruptured and unruptured aneurysms, that would eliminate many of those drawbacks, using propensity score analysis – a statistical matching technique that attempts to estimate the effect of a treatment by accounting for the multiple covariates and resulting in equivalent populations for comparison.
TBF: How will your study impact the landscape of preventive brain aneurysm research? JM: Right now, there is no large study on wide-neck aneurysms. I want this to be the “go to” study for anyone wanting to study and learn more about this type of aneurysm. Understanding the best treatment for unruptured wide-neck aneurysms will help prevent aneurysm rupture in this population. If we find out there is no difference in treatment, this is still an important finding and suggests that each individual doctor should provide the treatment that he or she feels is best in his or her hands.
TBF: What needs to be done to better educate people – primary care providers, as well as those not in the medical field – about the risks and warning signs of brain aneurysms? JM: Some brain aneurysms may be discovered before they rupture. There are certain features that are considered risky, such as large or enlarging size, irregularity, history of smoking or high blood pressure, and a personal or family history of aneurysm rupture. If these risky features are present, an unruptured aneurysm should be treated. Other brain aneurysms are discovered after they rupture and usually patients experience a so called “worst headache of life.” This is typically an emergency and these types of aneurysms should be treated immediately. What I’d like people to know is that brain aneurysms may be frightening, but we have many excellent treatments and these treatments are only improving. The future of brain aneurysm understanding and treatment is bright.
A L O O K AT O U R R E C I P I E N T S !
Dr. Jennifer Kim TBF: Dr. Kim, tell us a little about yourself. JM: I got a PhD at Brown University and currently am a Neurocritical Care Fellow at Mass General Hospital. I am also currently in training at Brigham and Women’s Hospital. My uncle died of a subarachnoid hemorrhage so I have a personal reason to want to help prevent that kind of tragedy from happening to other families.
TBF: Is a subarachnoid hemorrhage different than a brain aneurysm? JK: A subarachnoid hemorrhage is basically a bleed in the brain that occurs in the space right outside the brain (subarachnoid space). Other than trauma, brain aneurysms are the main cause of subarachnoid hemorrhages. People who are suffering from this are not only some of the sickest patients we take care of, usually staying in neurocritical care units for a long period of time, but they are at risk for a lot of different complications. I am interested in understanding how we can minimize the neurologic damage that occurs in these patients.
TBF: Tell us a little about the research project for which you received the grant. JK: The name of the project is: ‘Identifying electroencephalographic patterns to predict patients at high risk for delayed cerebral ischemia after subarachnoid hemorrhage.’
TBF: Again, in layman’s terms? JK: One of the worst secondary injuries that happens to patients with subarachnoid hemorrhages is delayed cerebral ischemia – a condition that involves secondary strokes. These strokes obviously weren’t a part of the initial injury, but they damage even more brain tissue and lead to more neurologic deficits and disabilities in the patients’ recoveries. What we want to do is try our best to prevent this secondary ischemia from happening. Electroencephalogy (EEG) is a method by which to measure brain activity, or brain waves, in patients – a noninvasive method performed at the bedside – which could identify patients at risk for this condition.
TBF: How will your research impact the landscape of preventive brain aneurysm research – maybe eventually for primary injury rather than just for secondary? JK: Primary prevention for subarachnoid hemorrhage is a difficult and interesting problem because most people don’t know they have a brain aneurysm to begin with. The first time they may see a doctor is when they have the actual bleed. There is obviously a very high interest in looking at risk factors, and helping to identify those in the general population that are at risk. Imaging, involving screening the entire population, is not the most cost effective approach due to the incidence rate. EEG unfortunately can’t address identifying those at risk, however, my hope is that for those patients that survive the initial bleed, we can identify those at risk for further serious consequences and skirt those complications. The ideal outcome of the study would be to identify within the EEG some brain activity patterns that are abnormal, that are distinct in the patients that are at the highest risk for the delayed cerebral ischemia. If we can identify that sub population before the secondary strokes happen, we can work towards treatment interventions and more intense monitoring to try to help prevent secondary strokes from happening and aid their recovery.
TBF: What do you think needs to be done to better educate people – primary care providers as well as those not in the medical field – about the risks and warning signs of brain aneurysms (initial injury)? JK: I think that primary care providers are very important in helping to screen patients for these aneurysms. The main risk factors they can identify are whether there are familial patterns and history of brain aneurysms because it’s a known risk factor, and an easy one to educate primary care physicians on. In terms of public awareness, it’s easy to ignore headaches, but we could learn from what has been done with stroke. Like stroke, a brain aneurysm is a time sensitive event, and stroke’s campaign, built around the acronym of FAST (face, arm, speech, time) is designed to build awareness of the symptoms. If we could get awareness around the catchphrase sign of subarachnoid hemorrhage – “worst headache of life” we could hopefully identify patients with initial (sentinel) bleeds and get them to the appropriate treatment facility prior to a life threatening rupture.
ADVOCACY EVENTS
Lobby Day The Bee Foundation traveled to Washington, DC on March 29th, 2017 to lobby for increased funding for Brain Aneurysm Research and to support Ellie’s Law (H.R. 1648) which is a bill to authorize $5 million each fiscal year, for five years, to the National Institute of Neurological Disorders and Stroke to conduct or support further Comprehensive Research on Unruptured Intracranial Aneurysms. It was a very successful day, as we were joined by The Brain Aneurysm Foundation and over 100 advocates on Capitol Hill lobbying for our cause. The Bee Foundation had three teams of affected families, friends, and survivors who took the initiative to have their voices heard. In addition to advocating for Ellie’s Law, we asked to submit report language to accompany the FY 2018 Labor, Health and Human Services, Education, and Related Agencies (LHHS) Appropriations Bill recognizing the concern that not enough research is focused on brain aneurysm prevention, and requesting a report from NINDS regarding its annual support level for brain aneurysm research funding over the past five years. It was a very successful trip, which prompted Congressman Patrick Meehan (PA-7) to hold a press conference in our home town of Wayne, PA in honor of brain aneurysm survivors and to promote Ellie’s Law and its introduction to the House of Representatives. Our Lobby Day and local Connecticut efforts have reaped significant benefits due to our meetings with Connecticut Senator Richard Blumenthal (D-CT) and Chris Murphy’s (D-CT) offices. We cannot thank you all enough for your support through lobby efforts and the willingness of Lobby Day attendees to work hard to have their voices heard. We would like to extend a special thank you to Fifi Baleva, Mackenzie Bell, Marla Brown, Patty Bubar, Melissa Chalmers, Joyce Doherty, Frank Doherty, Doug Kreszl, Meredith Fiore, Stephen McIlwain, and Eileen Smith.
Press Conference with Congressman Patrick Meehan (PA-7) The Bee Foundation, one of the Pennsylvania region’s largest Brain Aneurysm Awareness, Research, and Advocacy Organizations, hosted U.S. Congressman Patrick Meehan (PA-7) along with survivors and advocates on Friday, April 7th to urge lawmakers to authorize more federal funding to combat brain aneurysms and provide resources to patients who have suffered aneurysms. The event included brain aneurysm survivors Bonnie Weber and Kathy Ricciardi who shared their own stories with the Congressman in an effort to increase awareness and garner support for Ellie’s Law. 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.
Congressional Briefing on Brain Aneurysms The Bee Foundation traveled to Washington, DC on October 26, 2017 along with the Brain Aneurysm Foundation to take part in a Congressional Briefing on Brain Aneurysms. Their lobby partners Arnold & Porter Kaye Scholer coordinated the briefing to bring together the Ellie’s Law bill leads, members of the brain aneurysm patient advocacy and research communities, clinicians, and industry to bring more attention to this issue. We would like to thank Dr. Michael Chen, Associate Professor and Neuroendovascular Research Director at Rush University Medical Center in Chicago, IL and a member of our Scientific Advisory Board for being a part of the panel discussion. We’re thrilled to be supported by our congressional champions Congresswoman Yvette Clarke from New York, Congressman Patrick Meehan from Pennsylvania, and Senator Richard Blumenthal from Connecticut. We have worked closely with these members and their staff in advancing Ellie’s Law and thank them tremendously for introducing the bill into both the House of Representatives and the Senate this year. Congresswoman Clarke and Congressman Meehan were recipients of the Inaugural TBF BEE Courageous Award, given to someone who lives the mission of The Bee Foundation and has taken initiative, despite adversity, to advance Brain Aneurysm Awareness and Research.
ADVOCACY ACTION
What Can You Do To Help? We need to gain further support in the form of additional co-sponsors so we can get the bill signed into law. Visit www.thebeefoundation.org/advocacy to download a letter of support to urge your Representative and Senator to cosponsor Ellie’s Law. Here are some key points we recommend to help them understand the importance: 1. On a personal level, 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, 1 in 50 people.
or
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.
Save the Date! March 20, 2018 Join us for Lobby Day on March 20th to be part of the movement and MAKE YOUR VOICE HEARD IN THE FIGHT AGAINST BRAIN ANEURYSMS.
R E S E A R C H U P D AT E
2016 Research Grant Update The Bee Foundation awarded its 2016 Research Grant to Mt. Sinai in New York. The Project is titled “Using Genetic Varients to Identify Molecular Pathways Leading to Intracranial Aneurysms Formation in Humans: A Pilot Study.� We spoke with the Clinical Trials Manager recently and obtained the current status of the study:
This project is currently underway and quickly enrolling after a prior administrative hold to change the study personnel. The project is now being run under Dr. Christopher Kellner, Assistant Professor Neurosurgery, as Primary Investigator and has a Primary Coordinator associated with it. To date, there are approximately 20 samples that have been analyzed and 5 patient samples pending analysis. They estimate to enroll ~5 patients per week which gives them a target completion date for enrollment of April 2018. We will be conducting a site visit in early 2018. Stay tuned for more exciting news on the research being done to try and combat brain aneurysms.
NEXT O N T H E H OR IZO N . . . The Bee Foundation Clinical Research Fellowship The Bee Foundation Clinical Research Fellowship will afford the opportunity for a neurology or neurosurgery fellow to spend a dedicated year pursuing clinical research as a member of the National Institutes of Health/ National Institute of Neurological Disorders and Stroke (NIH/ NINDS) StrokeNet. The NIH StrokeNet is a coordinated, national network of 25 regional centers (more than 200 hospitals) that serves to advance research in stroke treatment, prevention, and recovery. The NIH StrokeNet provides unparalleled resources and infrastructure to conduct high quality clinical and translational research. The goals of The Bee Foundation fellowship are to increase the extent of brain aneurysm research conducted within the StokeNet, and more importantly, provide a fellow with invaluable training, connections, and support that will provide the foundation for a successful career as a leader in clinical brain aneurysm research.
Interested in learning more and joining our Fellowship Capital Campaign? Contact us today at info@thebeefoundation.org.
SHARE YOUR STORY
KALEY’S STORY Kaley, 29, recently married and a new mom, was diagnosed with two brain aneurysms and faced with the decision to monitor or surgically remove. With a deep family history of brain aneurysms including four family losses, Kaley decided to undergo surgery and remove both aneurysms knowing that 40% of ruptured aneurysms result in immediate death with the remaining 60% experiencing significant and even fatal complications. Ten months after diagnosis, surgery and recovery, Kaley was back at work as a teacher. “I wanted to share my story. I hope my story helps bring a little positivity or a glimmer of hope to anyone that may be experiencing a similar situation. Bad days don’t really happen often for me anymore, because I know things could always be worse. I know that if my mom didn’t harass me to get that MRA because of our family history, I might not be here for these experiences. I appreciate my family and friends more than I ever have. “
- Kaley Noone, brain aneurysm survivor
KATHY’S STORY My story began on November 17, 2015 at 1am. That is when my husband, Mike, woke up to me having a grand mal seizure. I would come to find out, I was one of the lucky ones. We found out it was a 33mm brain aneurysm in the left middle cerebral artery, roughly the size of a golf ball. Everyone told me how lucky I was to catch it. After Mike’s many calls, research, spreadsheets and appointments - we chose to go with a neurosurgeon from NY whose approach was cerebral bypass and occlusion. I said goodbye to my kids, my husband and my family knowing the risks, but anticipating I would see everyone the next day. Those first few days my CT scans kept showing everything was good, but I was not waking up as planned. Then finally, my surgeon saw signs of a stroke and within an hour I was back in surgery for a craniotomy. Ultimately that is what saved my life and I awoke two days later. As a result of the stroke, I could not think straight, talk, open my eyes or move my right side - but my surgeon said I would be just fine! I stayed in NY in the ICU for almost a month. I had to relearn how to get up, move my right side, and how to think/express myself. I was transferred to a hospital where I finished my rehab and recovery until I was ready to go home. I have some lingering pain in my cheek, some minor speech issues, but other than that I am doing well. It is truly a blessing that I have been able to get through these last two years. It has given me the opportunity to see things differently. The Bee Foundation was there to point me in the right direction, and I will be forever grateful to Christine and Erin for their efforts. I want folks reading this to know there is hope. The Bee Foundation and others are fighting for research funding to prevent stories like mine and others from happening again. We need to BEE AWARE, BEE COURAGEOUS and most of all BEE HAPPY!
- Kathy Ricciardi, brain aneurysm survivor
SHARE YOUR STORY
ELLIE’S STORY Our family suffered a significant loss on July 16, 2014 when our oldest daughter, Ellie, suddenly passed away from a ruptured brain aneurysm at the age of 13. Ellie was a vibrant, loving kid. She loved God, her family and friends, superheroes, golf, Reese’s Peanut Butter Cups, the color pink and pizza. She was a unique spirit who loved life, was accepting of others and persevered in everything she tried. Ellie danced like no one was watching and sang like no one was listening. We hope her legacy is one of encouragement to always be yourself and let that shine through: eat a Reese’s Cup every now and then, feel like a superhero and wear pink somewhere you wouldn’t expect to see it.
We love and miss her every day and were blessed to have had her in our lives.
- The Helton Family
MALLORY’S STORY On August 25, 2016, I said goodbye to one of the most humble and kind young girls who had everything going for her. At the age of 27, Mallory Rae Brewer suffered a fatal brain aneurysm. She was a 2011 graduate and gymnast at the University of Pittsburgh and had just received her MBA from Katz School of Business in April 2016. She “flipped” through life and really made an impact on everyone she met. She was strong and fearless. Mallory collapsed from a ruptured brain aneurysm while doing Crossfit. She had 2 aneurysms and a week later, the doctors found the 3rd one that needed to be operated on. On her last day, Mallory was up and walking, she brushed her teeth and lifted hand weights, she ate, she watched TV and, played games; she even flirted with the nurses and talked about doing karaoke. When I asked her what kind of day she had, Mallory said, “OUTSTANDING.” Then the phone rang at 3:34 am. “Mallory took a turn for the worse. She was in cardiac arrest.” By the time I arrived at the hospital they had been trying to revive her for 40 minutes. This strong, determined young girl was gone. When she was little she would sign her journal “Believe and Achieve.” As she got older she was passionate about the saying “Never be less than your dreams.” She lived life to the fullest and I truly
hope that her legacy will live a long time.
- Mary Brewer, Mallory’s mother
SHARE YOUR STORY
TRAVIS’ STORY I met Travis Valentine, a fellow Chi Psi brother, fifteen years ago and am privileged to count him among my friends ever since. He passed away from a ruptured brain aneurysm in his home in Washington, DC on February 14th, 2017. Two adjectives come to mind when I remember Travis. Thought-filled and thoughtful. Travis was thoughtful, and as time moved on, it became apparent to me that he was inspiring thoughtfulness in those around him. Not surprising at all, Travis thrived in the professional world, working for start-up and emergent employers. He was productive, successful, and was quickly recognized as an “impact-player”. He was respected and most importantly, he was well liked. Only after his passing did I learn of his affinity for the quote attributed to Benjamin Franklin, “What good shall I do this day?” I learned that he had been actively applying this simple question to all of his personal and professional pursuits. I’m left to wonder how long this had been his daily devotion, but it is completely consistent with the thought-filled and thoughtful man who I am pleased to call my Brother.
- Andrew J. Dewing, Travis’ Friend and Chi Psi Brother
ANGELO’S STORY My brother Angelo, 17 at the time, had a brain aneurysm due to an AVM in the back of his brain. He happened to be at school when he got an uncontrollable headache and started losing his senses. He was rushed to a nearby hospital after he started having seizures. He was air lifted to Maine Medical Center in Portland, Maine within the hour. My family raced to drive to the hospital where a doctor met to tell us that he had had a brain aneurysm and we were in complete shock. We didn’t understand how this could happen to a perfectly healthy athletic teenage boy. Angelo was already in surgery when we arrived. The doctors told us to expect the worst. But hours later he was out of surgery and then deeply sedated for days to try to minimize the damage done to his brain. After countless brain surgeries and months in the hospital he was left without his ability to walk or speak. He was moved to a long term rehabilitation center. I am so happy to say he can talk again and has not lost a bit of his humor. He has now moved back home where he is still doing therapy to try to regain the abilities he had before. I am so proud of him every day for trying his best and never giving up on himself. He is my hero and role model.
- Hrisanthi, Angelo’s sister
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 (844) 823-2873 or email info@thebeefoundation.org to get started.
TBF Store Now you can give back by representing the cause in our limited edition TBF Gear. 100% of the proceeds support the mission of The Bee Foundation. Check out our custom apparel and limited edition photography items, inspired by Jennifer Sedney.
SWEET GIVINGS Thank you to our donors who have are critical to fulfilling the mission of The Bee Foundation. Please visit www.thebeefoundation.org/sweetgivings for a full list of our 2017 donors. A special thank you to Corporate Sponsors and Benefactors who have donated over $500 in 2017. (list current at time of printing)
2017 CORPORATE SPONSORS National Benefit Partners Vynamic Chubb Penumbra USA Today Network Philadelphia Eagles HartfordFunds Janney US Retirement & Benefit Partners SF&C Insurance Associates, Inc.
Voluntary Employee Benefits Advisors Edge Therapeutics CDW Fortinet Veeam iO Eastbridge Consulting The Elan Group M3 Tech Allstate Benefits
2017 BENEFACTORS Ruth & Jeremy Anagnos Glenn & Barbara Becker Dan & Jackie Brower Tom & Sharon Brown Mallory Brewer Headstand Campaign Dennis & Patty Bubar Chi Psi Fraternity of George Mason UniversIty Joseph & April Denny Frank & Joyce Doherty Jay & Peggy Doherty Suzanne Elsasser Mickey & Angie Faulk The Huisking Foundation Inc Wedding of Sally Freedman & Chris Skoog Molly & Nelson Gaertner Steve & Nancy Graham Todd & Karen Helton Michael & Bonnie Kane Tinker & Joy Kelly Matthew Kuntz
Brian Mahoney Skip & MaryLou March Steve & Carissa McIlwain Deepa Mischler Dr. J & Wendy Mocco Alicia Paramo-Dionne Chili Cookoff Fundraiser Pepsico Foundation Brian & Jess Podgajny Mike & Kathy Ricciardi Richard & Julie Schechter Len & Alison Sedney David & Diane Sedney Bruce & Reenie Shandler Eileen Smith Alex Smith Richard & Mary Smith John & Jacqueline Smith Synchrony Financial Brad Tanner Stefanie Williams
2017 IN-KIND SPONSORS Cisco Brewers Turpin Landscaping Blue Route Entertainment
Gannett Bryn Mawr Trust Insomnia Cookies
2017 HONEY BASH GALA
The 4th Annual Honey Bash Gala was a huge success, raising over $175,000 for Brain Aneurysm Research and Awareness, our largest fundraising effort to date. The event was held at the Cira Centre, a beautiful venue in the University City section of Philadelphia. The evening started with signature cocktails, with spirits provided by Cisco Brewers and delicious hors d’oeuvres catered by Jose Garces, owner of JGDomestic. The silent auction opened at 6pm and included one-of-a-kind items like a honey-colored beach cruiser, premium tickets to sporting events, and our custom succulent centerpieces. Our Guest of Honor, Kevin O’Neill from Arnold & Porter Kaye Scholer, spoke about his close connection with Todd Helton, who is the father of Ellie Helton, the namesake of Ellie’s Law. His dedication to brain aneurysm research has gained the attention of Congressional Representatives Yvette Clarke (NY-9) and Patrick Meehan (PA-7). Founders Christine Kondra and Erin Kreszl introduced the first ever Bee Courageous Award Winners. We honored Congressional Representatives Yvette Clarke (NY-9) and Patrick Meehan (PA-7) for their dedication to lobbying for increased federal Brain Aneurysm Research Funding through Ellie’s Law. Next up, we began our live auction, which raised $26,000 for brain aneurysm awareness and research! Live auction items included a New York City trip with tickets to see Hamilton the Musical, tickets to see the Philadelphia Eagles against the Arizona Cardinals, a one week stay in Nantucket, a Sonoma and Napa escape, and a relaxing three night stay at Canyon Ranch Spa. Following the auction, our keynote speaker, Dr. Bill Mack of Keck Medicine USC and a Scientific Advisory Board member, discussed the importance of private funding for brain aneurysm research. The 2017 Bee Foundation Brain Aneurysm Research Grant Award Winners, Dr. Jennifer Kim of Massachusetts General Hospital and Dr. Justin Mascitelli of the Barrow Neurological Institute, thanked the crowd for their ongoing support making their brain aneurysm research studies possible. Just before guests enjoyed the famous Bee Courageous Photo Booth, Dr. Bill Mack and Dr. J Mocco led an unforgettable paddle raise kicking off The Bee Foundation’s Fund a Fellow Campaign and raising an astounding $38,000. We would like to extend an enormous thank you to all of our supporters, whether or not you could attend the event, and to all of our sponsors, without whom this event would not have been possible. We can’t wait for Honey Bash 2018.
2018 D AT E S T O R E M E M B E R March 20, 2018:
Brain Aneurysm Advocacy Day, Washington D.C.
June 4, 2018:
Summer Classic Golf Tournament, Williamstown, NJ
September 29, 2018:
5th Annual Honey Bash Gala, Philadelphia, PA
BEE COURAGEOUS W E N EED Y O U ! Too often the signs go unnoticed and we lose those we love in the prime of their lives...30,000 brain aneurysms rupture per year, 40% ending in death. 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 $700K since 2014 to raise awareness and fund preventative research. Donate today and join us in the fight against brain aneurysms. Never underestimate the power your support can have in people’s lives, THANK YOU!
the bee foundation
303 west lancaster ave. #334
wayne, pa 19087