Each month, we will feature a new participant or team from one of the nation-wide National Brain Tumor Society events.
Do you think you should be spotlighted or know of someone who should be? Please fill out this form to nominate someone. You can even nominate yourself or your team.
So many participants are doing wonderful things to fight brain tumors and we can't wait for you to share some of them with us.
Every one or our participants is part of the movement to bring the issue of brain tumors to the forefront. You are all in the spotlight to us!
Tony's Ambassadors, Dallas-Ft. Worth Brain Tumor Walk
to his daughter Angi, Tony Pusateri knew how to enjoy a good party. He was “that guy” who took the time to get to
know people personally and was always on the look out for the best food in
town. In 2011, Tony was diagnosed with Gliomatosis Cerebri. His family and friends were devastated at
slowly losing the husband, father and friend they all knew. But Tony and his
family all accepted the journey they had before them and over the next 7 short
weeks, they celebrated! Loved ones swarmed to their house. They threw lots of
pizza parties, told lots of stories, and of course, there was lots of laughter,
silly jokes and tears.
Tony was amazingly
inspirational and generous and “Our Ambassador of Life” for his family.
couple of months after Tony passed away, his family got involved with
NBTS. They wanted to honor his memory,
and the first Dallas-Ft. Worth Brain Tumor Walk that they participated in was
also Tony’s birthday. It was a tough
walk for friends and family, where stories were shared and tears were shed for
a man who touched them all. In two short years, Tony’s Ambassadors have
raised over $10,000 in Tony’s memory. Out in San Francisco, Tony’s daughter Michelle
donated over 150 bags of “Tony’s Trail Mix,” a mix of all his favorites designed
by Tony himself, to the San Francisco Brain Tumor Walk. Michelle also sells the mix through her
granola company Nana Joes, with profits going toward brain cancer
Angi remarks, through it all, this experience has not only brought them closer
but also brought them an awareness of how strong our faith in God is and how
strong our bond with our family and friends is. “We don’t take anything
for granted and we celebrate everyday!”
Riders for Rohan, Boston Brain Tumor Ride
Training for and competing in a marathon takes patience, courage and the willingness to fight through pain and hardship. Dan Rohan's wife Sarah was training for her second marathon last summer when she was diagnosed with a Grade 3 Astrocytoma.
Since then Sarah, Dan, their family and friends have been testing their endurance every day. In the midst of the exhausting chaos of treatment and service as a tireless caregiver, Dan still found the energy to captain one of the top teams in May's Boston Brain Tumor Ride. Sarah has been an inspiration in her drive, determination, and positivity since her diagnosis.
Sarah is back to running and training, getting stronger every day. The support we have received from our fellow Riders, friends, and family has been amazing. We are committed to having an impact on this cause and we look forward to participating in future events.
The Tuminators "We've Got Nerve", Portland Brain Tumor Walk
Kelly White has a marvelous sense of humor and fierce determination. She also has an extremely rare condition called Neurofibromatosis Type 2 (NF2), in which multiple tumors form on the nerves of the brain and spine. In her first surgery after diagnosis in 2008, doctors removed five tumors. This year, Kelly expects another 10 to be removed, joking, "my MRI techs like to play Connect the Dots." Kelly is participating in a NIH study in Bethesda, where she receives care from "the best doctors in the world."
Kelly achieved a three year goal when she participated in the 2011 Portland Brain Tumor Walk, and she is thrilled to be returning with friends this year. One of them, Vaughn Atkinson, is a fellow NF2 survivor. Kelly praises events like the Walk as a source of hope for "those of us struggling with the day to day issues that accompany brain tumors." She also notes that money raised at events like this helps to support studies like the one in which she is participating. Kelly's tumor type might be rare, but she has an unbeatable spirit that's even harder to find.
Team Toast, Bay Area Brain Tumor Walk
Team Toast and its captain, Jackie Oswold, were standouts at this year's Bay Area Brain Tumor Walk, Jackie's fourth year in the event. Maybe it was the tent the team hosted, complete with mimosas. Or maybe it's Jackie's spirited approach to her struggle.
The team name, short for "Tumors are Toast," might be lighthearted, but Jackie and her team are very serious about finding a cure and raising money to help make that happen. Jackie was diagnosed in 2008 with a Grade 3 Anaplastic Astocytoma. Earlier this year, the disease returned in the form of a Grade 4 Glioblastoma multiforme.
Jackie is enormously grateful to her family and friends: "Without them, you can't get through this." She received many donations through Caring Bridge and the new Fundraising with Facebook application: "I posted to Facebook once a week asking for donations. The new app makes it a lot easier." She advises other participants, "Don't ever be afraid to ask. In fact, ask your friends to ask their friends and family. The further you spread awareness, the more donations come in." We're raising our glass to Jackie and Team Toast!
Team Slayman Spirit, Delaware Brain Tumor Walk
Team Slayman Spirit is a fixture at the Delaware Brain Tumor Walk, with friends and family joining team captain and 7-year cancer survivor Michael Slayman to celebrate and fight for a cure. Michael’s wife Laura nominated him for the Participant Spotlight as an example of an individual who refuses to let a brain tumor stop him or even slow him down!
Michael was first diagnosed with a grade 3 anaplastic astrocytoma in 2005. He has had three surgeries in addition to undergoing chemotherapy and radiation treatments. His philosophy has a place of honor on the kitchen wall at home: “It Is What It Is.” This quiet but firm sentiment has helped Michael manage his treatment alongside a full-time job and keeping up with his teenage son!
Michael attributes his fundraising success to his strong team. “I generally do fundraising with my team….I mostly work to corral all my teammates, whether they can be with us at the event or not.” He is also a fan of the online fundraising tools, using email “and now Facebook.” Most important, he reminds fellow participants to “Push, push, push! If you get a firm ‘NO,’ then you can move on, but most people are wiling to give to this cause.”
Greg's Brain Matters, Delaware Brain Tumor Walk
Melissa and Greg Dixon led ‘Greg’s Brain Matters’ to the team fundraising award at last year’s event. The team returns this year to walk in Greg’s memory with the motto “Walk so others may walk in the future…” As Melissa told us, “there was never a doubt ‘Greg’s Brain Matters’ would return to participate in the 2012 Delaware Brain Tumor Walk.”
Melissa had participated in previous Brain Tumor Walks in memory of a friend’s mother. It was less than a week after the 2010 event that Greg was diagnosed with a Glioblastoma Multiforme (GBM). As a former participant, Melissa said it was “a natural transition” for her and Greg to create a team for the 2011 Walk in Wilmington. Melissa finds inspiration in the sense of community and shared understanding that prevails at the event.
Melissa’s advice to other team captains and participants is to communicate your enthusiasm and belief in the cause. People “need to hear your story to inspire them to do awesome things!” She encourages team captains to “make each team member feel they are a valuable part of the fundraising plan” by emphasizing “no amount is too small” and sharing creative tips to make the gift more than a number. For example, converting a loved one’s birthday into dollars and cents “often convinces donors to give more than they would have otherwise given.”
Melissa shared an important reminder: “Don't underestimate the power of people and relationships. The people in your lives are, ultimately, what will get you through your journey as a brain tumor patient, caregiver or friend. Letting people help you, will also help them.”
Phoenix Brain Tumor walk
In her own words: "I am a 5 year survivor of GBM IV, glioblastoma multiforme - grade 4. In December, 2007, the headaches began - and stuck around all month. Finally, my friend said "we need to take you to the ER." It was lucky she did, because next thing I know, the nurse is saying to me "You have a large mass in your brain that needs to come out."
It turned out my parents' best friend was a nurse at St. Joseph's in Phoenix. She got on the phone and I was in surgery by 6AM. When I came to after the surgery, my first words were "It's not a Tumah!" Hey, I still had my sense of humor! :) I feel very lucky to have had the best surgeon, 100% removal of the tumor from what they could see, and the head of Neuro-Oncology as my doctor."
Jenn truly has an indomitable spirit. She formed "Jenn's To Hell With The Stats" team in 2008 with friends and family, and the team has been among the top fundraisers every year. With a little over a month to go before the event, in fact, Jenn and her team are the top fundraisers for the event! Like she says, "Keeping a positive attitude over anything else is key to staying alive!"
Phoenix Brain Tumor walk
Lanette Veres has been a leading light in the brain tumor community for many years. After losing her grandmother to the disease in 1992, Lanette herself was diagnosed in 1998 with Anaplastic Oligodendroglioma. An important element of Lanette's strategy for winning against the disease was reaching out to others in similar circumstances. She became an active advocate for patients and survivors as founder and president of Grey Matters Foundation.
From the Grey Matters website: "To see the gifts, cards and packages she sends out is to understand the meaning of the Gray Matters Foundation. They are bright, colorful, joyful and cheerful, with stickers bearing the Foundation’s trademark turtle with the tongue sticking out, because brain tumors stink!"
Lanette speaks to groups around the country about her experiences as a survivor and her success in organizing the Foundation to support others in the brain tumor community. She says "I want to be a link between patients, families and 'big guys' like NBTS that have solid GOOD support information."
Lanette has captained the Brain Buddies team at the Phoenix Brain Tumor Walk since 2005 and is excited to return this March!
Team Grey Matters North Texas Supporters
Dallas-Ft.Worth Brain Tumor Walk
Karen and Steve Kuryla are deeply committed to supporting the brain tumor community. Steve is a 10-year survivor of anaplastic oligodendroglioma and he and Karen learned of the Dallas-Ft. Worth Brain Tumor Walk through their involvement with the Grey Matters North Texas Brain Tumor Support Group. The organization is dedicated to providing emotional and logistical support to brain tumor survivors and their families as well as research.
Karen and Steve serve as team captains of Team Grey Matters North Texas Supporters and are active members of the Walk committee. They know how important events like the Walk are because it gives survivors, family, and friends the opportunity to come out to Trinity Park in Ft. Worth and have a day of fun and connect with others in the community.
They also know how important is to fundraise in support of the National Brain Tumor Society’s Research, Patients Services, and Advocacy and Public Policy programs. Over the past three years, they have raised more than $10,000. They reach out to everyone they know for donations and contact businesses in their communities for sponsorships. Sadly, they find that many of the people they touch have a connection to someone who either has, or had a brain tumor.
Rabbi David Paskin
Boston Brain Tumor Ride
In 2002, Rabbi David Paskin’s second daughter, Liati, died of a brain tumor. In searching for people who could help, he found the Brain Tumor Society. He contacted Neal Levitan, former Executive Director of the Brain Tumor Society which merged with the National Brain Tumor Foundation in 2008 to form the National Brain Tumor Society. He jumped in and got involved right away. Soon after, he was invited to be on the Board and was primarily interested in patient care and providing resources to families that are dealing with a brain tumor.
“I was searching for a point of connection and community and had a yearning to make a difference. The Boston Brain Tumor Ride was the right place, at the right time and I fell in love with the community.” Said Rabbi Paskin, who had a team in the Ride for a couple of years. He was able to complete the 25 and the 50 miles routes and pushed thought the hard times thanks to the memory of his daughter.
At his first ride, he saw people who were sitting around while others were riding and thought it would be great to create a kids area to give people something to do. He went on to create “Liati’s Kids' Korner” a kids’ area dedicated to his daughter Liati. “It was our own little baby.” The kids' area has had Radio Disney and magicians, balloons, a popcorn maker, and artists. Today, he no longer rides and focuses on the kids' area and on his role as the Emcee of the Boston Ride. The ride is far bigger now and this year the rain held out and the kids had fun.
Get Your Head In The Game Walk - Delaware
On New Years Day 2010, Stuart’s mother passed away from a brain tumor. On October 5, 2010, she suffered a stroke and the family sat by her side for three long months until she eventually passed. Stuart’s father never left her side during those three months and spent much of his time working with doctors in regards to her health care. He was unfortunately an expert because his first wife died of a brain tumor 37 years before. Yes, you read that correctly. Stuart’s birth mother and the mother that raised him both died of brain tumors. As someone who works in the nonprofit sector, Stuart’s first instinct was to find the most appropriate charity to help fight the "good fight" - and he came across the National Brain Tumor Society.
After meeting the great people of the Kelly Heinz-Grundner Foundation, a subsidiary of the National Brain Tumor Society, he knew that is would be a great fit. Stuart got involved with the Get Your Head in the Game Brain Tumor Walk in Delaware. He became the team captain of "A Family Affair". This is his first year raising money for National Brain Tumor Society.
To date, asking for donations from friends and family hasn't been difficult with his Mom's passing still so fresh in everybody's mind. Both of his mothers were special ladies and positively affected all those who came in contact with them. They were both loved by many people - and these people have been more than willing to help them with the walk. Stuart hopes that the wonderful outpouring of support will continue even as time passes. He hopes donors show the same generosity next year and beyond and will keep on giving until we eventually beat brain tumors forever.
Boston Brain Tumor Walk, Boston Brain Tumor Ride
Michael Corkin has seen the National Brain Tumor Society grow dramatically from its early days. He served as the first Chairman of the Boston Brain Tumor Ride, and subsequently as a Board Member for the last 14 years. He has raised well over $200,000 using the Boston Brain Tumor Ride as his primary fundraising vehicle. Michael’s involvement with NBTS was the result of his daughter being diagnosed over 16 years ago with a brain tumor.
As the Chairman of the Boston Ride, Michael helped grow the ride from 50 people raising $30,000 to almost 1,000 raising over $700,000 in 2010 though various business connections with the help of a great committee and the support of the NBTS office. This year, the Boston Ride has a new Chair. He has been involved with the committee for years and is the natural successor for Michael’s position. Michael thinks he will do a good job. The entire Corkin family is involved in raising money for the National Brain Tumor Society. Michael’s Wife, Lauren, co-chaired the first annual Brain Tumor Walk in Boston which raised over $430,000 in its inaugural year.
This year Michael is focusing on raising money for the Ride and will be participating in the Walk as well. Initially, Michael sent 70-80 letters and emails to friends and family members to help make his fundraising goals. Michael has learned over the years that people donate to people and that you have to ask or they don’t donate at all. No amount is too small or insignificant.
Team Chez Nicole
Get Your Head in The Game Walk - Delaware
Team Chez Nicole honors the memories of two sisters, Nicole Testa and Cynthia Herrick, who both battled brain tumors with "beauty, grace, courage, and dignity", according to team captain Ken Testa. Nicole and Cynthia were best friends. Friends and family, as well as loyal clients from Nicole's Salon, Chez Nicole, walk in honor of Nicole and Cynthia at the Get Your Head in the Game Walk.
In the past, Chez Nicole has partnered with a local restaurant to hold a "Guest Bartending" event in which the tips from the night are donated to the team's fundraising efforts. Six Paupers, a restaurant in Hockessin, sponsored the event last year with great success. At the event, gift cards to restaurants and local businesses, as well as sports memorabilia, were raffled off. This successful fundraiser accounted for a sizable portion of the team's donations and the team plans on repeating the event this year.
Email updates to family and friends of team members is also a critical component of the team's fundraising efforts. This helps ensure team members and donors alike aware of where the team’s results are versus the goal the team sets at the beginning of each walk season. The team is also very fortunate to be able to utilize Chez Nicole Salon to get the word out. Many of the salon's customers help support the the team in one way or another.
Ken Testa, Team Chez Nicole team captain says, "We encourage each team to work together with local businesses for support. Our goal is not only to raise money for the Walk, but to pay tribute to two of most beautiful and inspiring women some of us have ever known."
Catherine Mannion, Team MartDogg
Race For Hope - Philadelphia
For the past five years, Team MartDogg has been one of the top two fundraisers at The Race for Hope - Philadelphia. Team MartDogg runs in memory of Catherine’s son, Marty, who died at the age of 19 from a GBM (glioblastoma multiforme). Race day has become a day to celebrate Marty’s life and his family and friends are always out in force. In 2010, the team had 160 participants and raised more than $40,000!
Catherine and her team are always looking for ways to increase the funds they raise. In past years, they’ve raffled off sports items including a game jersey from LeBron James, one from then-Eagles quarterback, Donovan McNabb, and a game ball from the Phillies World Series win. Most team members post pictures and stories about Marty on their personal pages, and they are not shy about asking their friends to remember him in this special way. They also aren’t afraid to ask their colleagues at work, members of their sports teams, and their friends and neighbors to join the team.
Catherine communicates with her team frequently, and keeps them focused on their goal - to raise money to find a cure, so that others affected by brain tumors will have the opportunity for a long and healthy life. In this way, Marty continues to make a difference in the world. Team MartDogg expects to be at the Race for Hope - Philadelphia, celebrating Marty’s life, for many years to come.
Alyssa McElfresh, Flip Flops and Polka Dots
San Diego Brain Tumor Walk
Alyssa is 9 years old. She was diagnosed with a brain tumor during a routine eye appointment just over two years ago. Just as soon as she got home from her first Brain Tumor Walk in 2009, Alyssa started planning for the next Walk.
In 2010, Alyssa’s team, named after her two favorite things, Flip Flops and Polka Dots, aimed to double the number of teammates and the total amount raised. Alyssa and her family held a variety of creative fundraisers to help them reach their goal. She and her sister, Taylor, designed and made beaded bracelets to sell, and mom and dad helped her organize a garage sale that raised over $1,200. Their hard work paid off - decked out in pink and lime green team T-shirts, Alyssa’s Flip Flops and Polka Dots placed third among the top teams at last year’s event!
Kate Burke, Team Hope
Bay Area Brain Tumor Walk
Kate Burke, a 7-year GBM survivor, wife, mother of two and captain of Team Hope, is a force to be reckoned with. For the past three years she and her team have held one of the top fundraising spots. This year is likely to be no exception. With her passion for the cause and her "slightly" competitive nature, she began securing donations for the 2011 Brain Tumor Walk even before the website launched. Kate's positive, can-do attitude and message of hope resonate with the brain tumor community and those around her. So much so that friends of the family are foregoing wedding gifts, instead requesting that donations be made in honor of Team Hope. With her sight set on the top fundraising spot and the wheels already in motion, Kate and Team Hope are once again poised to give the other teams a run for their money.