The Bee Foundation Summer Newsletter 2015

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July 2015

The Buzz Bee Strong

Bee Aware

Bee Courageous

Founders Message

By Christine Kondra (Doherty) It seems as though not many can escape being affected and knocked to the ground by a loved one suddenly dying of a ruptured brain aneurysm. Almost every person we have met from our banker to someone we bump into on a train has known at least one person if not two to three people that have been affected by this devastating condition.

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together by our beloved Mum who taught us that the most important thing in the world is your family. We love hanging out together - not that there aren’t arguments during dinners, beach trips and tons of opposing opinions; but this was unchartered waters for us with no navigation guide anywhere to be found. After one year later, we are still afloat and learning how to deal with this everyday. We have 18 cousins, just now one is looking down and watching over us.

This affected and shook not only our family, but all of her friends and colleagues from across the world. Erin and I began building awareness of the foundation by traveling across the country to key cities meeting experts in the field and picked cities where lots of her friends or family were located. We held small gatherings in Chicago, Washington DC, Philadelphia and NY/CT areas. We quickly realized that each person came to the

The Bee Foundation founders Erin Kreszl & Christine Kondra

Both myself and my sister, Erin started this foundation after we lost our beautiful, bubbly, fun "go big or go home" cousin at the age of 27 on Christmas Day 2013. As I walked out of the hospital that day after only holding her hand hours before, I swore "I never want anyone to ever experience what we just did in the last 24 hours." Jenny collapsed at 6:30pm on Christmas Eve and passed away at 4:02 pm on Christmas Day. We come from a very large, close family and this shook us to the core. With 18 cousins, (28 total with spouses) ages ranging from 16-39 and 6 sets of aunts and uncles for a total count of 40...you could say we have almost a full suited football squad. We are tight, thick as thieves, see each other often and have been brought

Our beautiful cousin, Jennifer Sedney

event so they could tell us their story of how Jenny had such an impact on their lives. Jenny had a sparkle to her and everywhere she went she danced on the shoulders of everyone around her.

After only one year, The Bee Foundation raised over $120,000 in 2014 allowing us to immediately start impacting brain aneurysm research in 2015. We had the

help from our incredible foundation team, Eileen Smith and Courtney Stern, Jenny's mother, father & brother, our parents and spouses, scientific advisory board, family, friends, volunteers, sponsors and our essential Board of Directors. We started this journey of building the foundation with the mission to raise significant dedicated research dollars for early detection and prevention of this life threatening condition. After 2014 and our Inaugural Honey Bash Gala on Sept 20th we are able to dedicate over $50,000 to medical research grants in 2015! We look forward to our 2nd Annual Honey Bash on Sept 19th, 2015 in Philadelphia, PA to continue the journey dedicated to innovative, impactful research.

Our 2015 Call-to Action is this to everyone:to raise funds that total much more than what is currently available to really drive meaningful and impactful research advances in brain aneurysm prevention and

detection. So many people have been affected by this. An estimated 6 million people in the United States have an unruptured brain aneurysm, or 1 in 50 people. Four in 10 people with a ruptured brain aneurysm will die.

Somehow we cannot escape this and when you have been affected it feels like someone took your legs out from under you with a lead pipe, crushing every bone.

You hit the ground and it takes a long time to get back up. This brain condition does not discriminate. You can be in the best health of your life and you cannot escape it.

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bereaved parents, spouses, and friends, it took me some time to imagine that I could ever do anything with this experience beyond nursing the interminable grief and anger. In time, though, the general lack of awareness of this disease and its symptoms, that so often mimic other health issues, took me beyond my personal anger. My nieces – two remarkable young women who were not only Jenny’s cousins but close friends – had come to that place long before me. The Bee Foundation was the result.

By Alison Sedney It all happened so fast. It was December 23 when my daughter, who was visiting her boyfriend, called to say she’d had a wicked headache that afternoon while working out. We thought she’d simply had a migraine.

After all, she felt better, and planned to drive home the next day as planned. Which she did, and we spent the day doing last minute shopping, gossiping, and wrapping presents – hours for which I will always be grateful.

Shortly after she placed her last present under the tree, she danced upstairs to take a shower and collapsed. She never regained consciousness, and left us forever on Christmas Day. Diagnosis – cerebral hemorrhage from a ruptured subarachnoid aneurysm.

The idea that this could have happened to a healthy, vibrant, yoga-practicing, kale-shake-eating 27-year-old was beyond belief; certainly, beyond ours. In the months that followed however, as I, Jenny’s Dad and her brother struggled to come to terms with what had happened, we also came to learn that aneurysms can occur in anyone, at any age, and they are certainly far from unknown in young, healthy people. Like many others in our family,

Our pillar is simple - it is Research.

Join us and help us make significant strides in research and awareness in 2015.

Bee Aware. Bee Courageous. Bee Happy.

Over the past year, we have met so many others who have been affected by this condition. We hope that the Foundation, beyond its ability to drive increased awareness and badly needed research, will also be a community for them; a way that those we love and those we have lost can play a significant role in changing the lives of others. We hope that you join us.

Become a member of our Bee Strong support community and join us in positively impacting the lives of those affected by brain aneurysms. Click here to contact us.

Bee Aware Meet Dr. M. Shazam Hussain, Scientific Advisory Board Member and Keynote Speaker for the 2015 Honey Bash Gala

By Alison Sedney

I’ve been involved in the field from very early on in my career. I was trained as a neurologist, and neurologists tend to be a little more focused on the clotting types of strokes, but I go back and forth between the two. Right now I’d call myself a hybrid between a radiologist, a neurologist and a neurosurgeon. I’ve been able to round out my knowledge and education, and as I’ve done so, I’ve gained not only a much greater understanding of the hemorrhagic strokes, but a broader approach to patients, and the ability to see things from a number of different angles.

The Bee Foundation welcomes Dr. M. Shazam Hussain to Most would agree that Aneurysms are an undertheir Scientific appreciated area of concern. Do you see that changing?

Advisory Board. Dr. Stroke as a whole is an under appreciated condition.

Hussain is the Head Most people don’t realize that it is the 5th leading cause of the Cleveland of death and the leading cause of disability in the U.S. Stroke Program and As such, it has a huge financial impact – on individuals Assistant Professor of and the medical community. We’ve definitely seen a Medicine gradual uptick in interest in the area and over the years (Neurology) at the we’ve been paying much more attention to the Cleveland Clinic condition. One of the issues has been a general sense of Lerner College of pessimism about outcomes – that is, you can make a Medicine in Cleveland, OH. His research and clinical diagnosis, but there’s not much you interests include MRI imaging “Most people don’t realize that strokes are can do about it. That’s true as far as of acute ischemic stroke and the 5th leading cause of death and the public awareness goes, as well, and endovascular therapy for hemorrhagic and ischemic leading cause of disability in the U.S.” it’s even more true for aneurysms than strokes. What people need to cerebrovascular disease. He understand is that there are many joins Dr. Michael Chen, last year’s Honey Bash Gala key advances in the diagnosis and treatment of all types of presenter, on the Scientific Advisory Board, and will be strokes – and aneurysms – that are resulting, every day, delivering the keynote presentation at this year’s 2nd in better outcomes for patients. From a clinical Annual Honey Bash Gala. perspective, this is very encouraging. The other issue is First, how are the two fields – strokes and aneurysms – lack of understanding of symptoms. People hear about related? chest pain and they immediately know they should call 911. With strokes – and aneurysms - we need that same Aneurysmal disease is really a subset of stroke. At the level of public awareness. At Cleveland, we’ve hired a Cleveland Clinic, we approach both as cerebral vascular Community Outreach coordinator to respond to the diseases; that is, diseases involving vessels in the brain. very real needs of education on the front lines, for both From our standpoint, there are many significant overlaps the public and the medical community. between the different types of strokes. Some involve clotting, others hemorrhages. When brain aneurysms rupture they produce a specific condition called subarachnoid hemorrhage, which is in fact a type of hemorrhagic stroke.

Was there a point when you began to broaden your focus to brain aneurysms as well as strokes?

What do you feel are some of the most promising areas of research or treatment?

I’ve been able to get involved in the organization of systems of care, an area which I think is very positive.

The approach mirrors the idea of trauma centers, in which equipment and expertise is focused in certain hospitals, and networks are developed that help to

identify and direct patients to the facilities best able to were in Germany, where time savings of up to 30-40 care for them. That match – getting patients quickly to minutes were reported. With an estimated 2 million the right facility – is critical: brain cells lost every minute, that’s industry data indicates that transfers “What people need to understand is a significant improvement! We between hospitals can lose up to 3 believe this is a very positive that there are many advances in the model, and there’s growing hours of time. I’m also very excited about what I think is one of the best diagnosis and treatment of all types of interest in these approaches advances in this area: the mobile strokes – and aneurysms – that are around the world: in fact, in stroke unit. Currently there are only Norway, where appropriate resulting, every day, in better four of these in the world, and only facilities can be very spread out, outcomes for patients.” two in the U.S. – one in Houston they are putting one of these units and one at the Cleveland Clinic, into a helicopter! which we introduced in late July of 2014 and are now in Why did you decide to join the TBF and what are your pilot stage. The unit is basically an ambulance equipped hopes for it? with everything you need to take care of a stroke victim.

It has a CT scanner to help distinguish between a clot When I first met with Christine and Erin I was and a bleeding condition, the ability to take basic blood incredibly impressed with their energy and motivation, tests, and a telemedicine unit which is essentially a two and the focus of their team and Board is right on: way camera so we can see and examine the patient in the honing in on how we prevent aneurysms from rupturing ambulance. This unit allows us to deliver very specialized in the first place, thereby improving outcomes for care right there in the field, significantly cutting down patients. More research in this field is absolutely critical, the times required to diagnose the condition and get the and their ability to generate additional resources towards patient to the right place. The first two of these units this area will be a fantastic accomplishment for the field.

Bee Courageous The Bee Foundation is changing lives through innovative research today: Announcing our 2015 TBF $50,000 Research Grant Recipient Dr. Aichi Chien The Bee Foundation is excited and honored to announced the recipient of its 2015 research grant. The grant award is being made to the Department of Radiological Sciences’ Division of Interventional Neuroradiology at the David Geffen School of Medicine at UCLA for research into early rupture risk factors using 3D analysis. Dr. Aichi Chien, the research project’s lead investigator, will address the Foundation’s 2015 Honey Bash Gala to be held on September 19, 2015 at Philadelphia’s Independence

Seaport Museum. “We’re thrilled to receive this grant from The Bee Foundation and believe that it will significantly advance our ability to generate critical findings in brain aneurysm research,” said Dr. Gary Duckwiler, chief of Interventional Neuroradiology at the David Geffen School of Medicine at UCLA. “Treatment of a brain aneurysm carries its own risks, and the decision to treat is significantly influenced by aneurysm size. Smaller aneurysms are considered lower risk, yet we have all seen small aneurysms that have ruptured and larger ones that have not. There is an urgent need to explore and evaluate other risk factors to ensure that patients receive the safest and most effective treatment possible.”

Dr. Aichi Chien is an Associate Professor in the Division of Interventional Neuroradiology at UCLA, and holds faculty appointments in the NIH-Funded interdepartmental graduate program of UCLA Biomedical Physics and in the UCLA ACCESS/ Bioscience Interdepartmental Program. Her research encompasses the computational analysis of intracranial aneurysms and novel algorithms to analyze clinical images.

Tell us a little about yourself ?

I am passionate about helping people be healthy and understand more about their own health. I reach this goal through research and education. I am very lucky to be in a profession which lets me do just exactly what I like.

Why did you get involved in the field of brain aneurysm research?

I was recruited by the Brain Aneurysm team in UCLA Interventional Neuroradiology before I completed my PhD because of my expertise in human blood flow and blood vessel properties in 2006. This is the team that invented GDC (the first detachable aneurysm treatment coil). I was asked to develop a blood flow analysis system to help identify which unruptured aneurysms need to be treated. It was challenging because very little is known about brain aneurysms. I was young and ambitious, and wanted to work in an important field as a fresh PhD graduate so I took the challenge AND I’m still working on it now.

What is your grant for?

This grant is to study a group of brain aneurysms which have been clinically followed for years. Among these aneurysms, some grew, some are stable, and some unfortunately ruptured. We will study the changes of these aneurysms in detail and establish a database which records all the changes in these aneurysm over the years, such as shape changes and blood flow changes. This data

will allow us to understand the risks of leaving aneurysms untreated. I should emphasize that less than 5% of aneurysms rupture; therefore, some aneurysms do not need to be treated. However, our knowledge of which aneurysms are at risk, and whether a low risk aneurysm can change into a high risk aneurysm and how much time it takes for the risk to change is very limited. This research is trying to use detailed aneurysm analysis methods (blood flow and 3D morphology analysis) to answer these questions.

Are you excited to speak and present your research at the 2nd Annual Honey Bash?

Very much!! I like to share what I know and being able to share with people who care about brain aneurysm research is an honor for me.

What will the grant money help you to accomplish?

This grant will allow us to collect data and perform the aneurysm study. This work is also an important foundation for future multi-center research to expand our knowledge and understand this field.

What message would you want the world to know about brain aneurysms?

Brain aneurysm rupture is a serious and dangerous situation. Although rupture can be prevented, less than 5% of brain aneurysms rupture. We need to know which aneurysms need preventive treatment because the treatment has risks, too.

Bee Happy A LOOK BACK at the Night That Launched the Bee Foundation: the 2014 Honey Bash!

THE FOUNDATION’S SEPT. 2014 GALA RAISED OVER $100,000 FOR BRAIN ANEURYSM RESEARCH It’s been almost nine months, but for those who attended the Foundation’s first Gala and major fundraising event, the glow still hasn’t faded. More than 200 people – a capacity crowd – filled the ballroom at Philadelphia’s Hotel Monaco on Sept. 20 for the 2014 Inaugural Honey Bash. Old friends, new friends,

colleagues, and involved medical professionals from all over the country enjoyed a full evening of food, wine, dancing, entertainment and education.

Dr. Michael Chen, Associate Professor of Neurology, Neurosurgery and Radiology at Rush University Medical Center in Chicago, delivered the Gala’s keynote presentation, discussing current research targets and the critical need for private research funding for work focusing on brain aneurysm prevention.

“I was honored to be able to share with this audience some of the medical background and current thinking on brain aneurysms,” said Chen. “By partnering with The

“We were thrilled by the level of enthusiasm reflected at this event,” said Co-Founder and Executive Director Christine Kondra (Doherty). “To see this kind of support right out of the gate was overwhelming.” CoFounder and sister Erin Kreszl (Doherty) agreed. “It’s also incredibly uplifting to know that everyone there left with a little more knowledge of this terrible condition – and hopefully, the dedication to join us in the fight against brain aneurysms.”

Months of work and planning paid off. Guests entering the registration area, where they were given champagne and auction paddles, were immediately

impressed. “This event could not have been better organized, “said Mary Smith, attending from Ridgefield, CT. “Everything flowed.” The centerpiece of the evening was the auction – a two-part event that utilized not only a live auctioneer, but an innovative mobile bidding system allowing those present (and not) to bid privately in real time, while they talked, ate, and even danced the night away! Designated foundation volunteers circulated among the tables, managing the bid process through iPads. Auction items included priceless experiences such as a private dinner with James-Beard award winning chef Jamie Bissonnette and a “name cameo” in world renowned author Jennifer Smith’s next novel.

Bee Foundation’s highly energetic and dedicated board, as well as seeing the vast support for this initiative, we have an incredible opportunity to push forward with much needed research into the condition.”

More than $100,000 was raised through donations and auction items –an outcome that far and away exceeded expectations and set the stage for the Foundation making its mark on impactful brain aneurysm research.

“The inaugural Honey Bash Gala last year was just amazing—so many people gathered to celebrate the life of this wonderful girl we all loved and united in doing everything we can to raise awareness and {develop preventative measures for ruptured brain aneurysms}. I can only imagine how much this event will grow each year, and can’t wait to see what the second event is like.”

– Carrie Denny, Editor of Philadelphia Wedding.

Upcoming Events Help spread the word about The Bee Foundation and the need for brain aneurysm research by attending a TBF Awareness Event in your region.

Our current TBF Awareness Champion Cities are Philadelphia, Washington DC, Chicago, and the Greater New York Region.

Interested in bringing a TBF Awareness Event to your city?

Contact us today at info@thebeefoundation.org.

Washington, DC – July 15th, Mussel Bar & Grille Restaurant map 7262 Woodmont Avenue - Bethesda, MD

Register Here

christine@thebeefoundation.org

BUY YOUR TICKET HERE & Reserve your Hotel Room in Advance

We are very excited to announce The Bee Foundation as a Charity Partner for 2015 Gortex Philadelphia Marathon Weekend & Wellness/Fitness Expo, November 20-22nd!

This is our Inaugural Marathon Race and it will become The Bee Foundation’s flagship race being that it is located in our headquarter city of Philadelphia. Joining The Bee Foundation team creates an incredible opportunity for you to have a direct impact on brain aneurysm research.

Every dollar donated and fundraised for this event will go directly towards a 2016 Research Grant!

The participant who raises the most amount of money will be awarded the honor of naming or dedicating in a loved one’s honor, THE BEE FOUNDATION 2016 Marathon Medical Research Grant!

By joining The Bee Foundation team you receive free registration and are committing to raise a minimum of $500 for The Bee Foundation. You will have the opportunity to participate in fun race day events including access to The Bee Foundation’s race headquarter’s tent and an end of race celebration at Brick & Mortar in Philadelphia.

Participation options for race weekend are: 1. Gortex Full Marathon Runners/ WalkersSunday, November 22nd at 7:00am 2. Gortex Half Marathon Runners/ WalkersSunday, November 22nd at 7:00am 3. Rothman Institute 8K Runners/WalkersSaturday, November 21st at 7:30am 4. Kids Fun Run - Saturday, November 21st at 10:30am 5. Virtual Runner - You choose time and place

Register Here or contact us with any questions at info@thebeefoundation.org

Get Involved Join our team and get involved! Use your creativity and passion to take an active role by fundraising or donating to brain aneurysm research and spreading brain aneurysm awareness. Choose from the options below to get started today!

It's Your Birthday!

In Lieu of Wedding Gifts

Do something different this year and celebrate your birthday by asking for meaningful donations for innovative brain aneurysm research instead of presents! Make this birthday count and create your own fundraising page today.

To celebrate your union, why not ask your friends and family to make a difference in the lives of those impacted by brain aneurysms? Make donating to The Bee Foundation an option for guests in lieu of gifts.

Create your own fundraising page today.

Get Active

In Tribute To

Get Active today and start your own fundraising campaign! Whether you are running the Philadelphia, Boston or Chicago marathon, Color Runs, Tough Mudders, skydiving, or anything in between, use it as an opportunity to raise funds for brain aneurysm awareness and research.

Create a special place to honor, remember or celebrate the life of someone special touched by brain aneurysms. Celebrate someone you love by telling your story, sharing photos and raising funds to impact the lives of those affected by brain aneurysms. Create your own tribute page today.

Gifts In Kind

Get Creative

We are pleased to receive in-kind gifts for our Honey Bash Gala as well as for our Live & Silent Auction.

Please call (617) 850-2515 or email christine@thebeefoundation.org to get started.

Shave your head, grow a mustache, or promise to dance all day if you reach your goal. Do your thing, just do it for brain aneurysm research!

Reoccurring Gifts

Planned Giving

Set up a recurring gift and create a continuous channel of support for innovative brain aneurysm research.

Please call (617) 850-2515 or email christine@thebeefoundation.org to get started.

The Bee Foundation welcomes planned gifts. We encourage you to speak with your financial planner when considering any type of planned gift.

Please call (617) 850-2515 or email christine@thebeefoundation.org to get started.

Shop To Give

Matching Gifts

Now you can give back by representing the cause in our limited edition TBF Gear.

T-Shirts, Notecards, Patagonia Fleece Vests, Iphone 5 Cases & Tumblers

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.

The Bee Foundation currently has corporate matching programs with GE Healthcare, Google and Realogy.

Support The Bee Foundation with all of your Amazon purchases Simply shop at smile.amazon.com, select Bee Foundation as your supporting charity, and the AmazonSmile Foundation will donate 0.5% of your purchase to The Bee Foundation at no extra cost to you. Sign up here today

Thank you from The Bee Foundation Team

2014 TBF Strategic Planning Retreat Courtney Stern, Eileen Smith, Christine Kondra (Doherty), Erin Kreszl (Doherty) Thank you from our Board of Directors Christine Kondra (Doherty), Co-Founder, Entrepreneur & previous biopharmaceutical director Erin Kreszl (Doherty), Co-Founder, Investment Consultant to Non-Profits and Corporate Retirement Plans for Mercer Investments Dan Calista, Board Member, Founder & CEO of Vynamic Michael G. Kane, Board Member, President/Gannett East Group, President & Publisher, Democrat and Chronicle Media, Rochester, New York Alison Sedney, Board Member, Director of Marketing at Cartus and mother of Jennifer A. Sedney Thank you to our Scientific Advisory Board Dr. Michael Chen, Associate Professor in the Department of Neurological Surgery at Rush University Medical Center.

Dr. M. Shazam Hussain, Head of the Cleveland Clinic Stroke Program and Assistant Professor of Medicine (Neurology) at the Cleveland Clinic Lerner College of Medicine in Cleveland, Ohio