Join us for the 7th annual Lap4Life Chadwick Lake Race/Walk/Kid's Fun Run/Community Health Fair on June 20, 2015 - Fun for the entire family!
Thank you to everyone who supported our 6th annual race. A special thank you to all of the selfless volunteers and sponsors who gave so willingly.
Lap4Life is a non-profit organization created to raise money and awareness for Desmoid Tumors and Organ Transplant Research.
Eleven years ago, at the age of 30, my brother was affected by a rare disease, Desmoid Tumors. These rare tumors affect one in every 2-4 million people. After nine years of medical treatment and multiple surgeries with subsequent complications he was left with few options. A final attempt to remove his large desmoid required resection of his entire small intestine. Following this, he could no longer eat and was reliant on intravenous nutrition.
Six months later he received an intestinal transplant a rare and risky procedure. This is currently the only hope of survival for patients with intestinal failure who are dependent on and often do not tolerate intravenous nutrition. Seven weeks after his transplant, he returned home to resume his life as a loving father and husband. Unfortunately, one week after being home, at the age of 39, he succumbed to an illness that his weakened immune system could not ward off.
Desmoid Tumors are uncommon conditions that affect multiple areas in the body. Because desmoid tumors are rare, research on them is scarce. Little is known about their cause, treatment and prognosis. It is known that desmoid tumors do not spread to distant sites (metastasize), however, they are locally very aggressive. When desmoid tumors are located in the abdominal cavity they are particularly troublesome. They can cause destruction of surrounding vital structures and organs and the worst of their complications can be fatal. Radiation therapy, chemotherapy, and surgical removal often have poor success.
Intestinal transplant currently offers the only hope of survival for patients with intestinal failure who are dependent on and often do not tolerate intravenous nutrition. While it is no longer considered experimental, intestinal transplantation continues to be very expensive and risky therapy with a need for life-long immunosuppression. Ongoing research has improved the outcomes significantly, to the point where patients like my brother can look forward to a long survival with a good quality of life. There is a desperate need for continued research both into the biology and treatment of desmoid tumors and into intestinal transplantation.
Your donations are greatly needed to help find answers, save lives, and build hope. This will help thousands of individuals and their families facing these horrific medical conditions. I hope you will support my efforts in raising money for this much needed cause. Every tax-deductible donation, regardless of size, will bring us one step closer to finding a cure for these terrible conditions. Please make your contribution check to Lap4Life and mail them to the address below.
All Proceeds will benefit the Desmoid Tumor Research Foundation and New York Organ Donor Network.
I thank you in advance for your generosity and support.
NY Organ Donor Network
The New York Organ Donor Network is dedicated to the recovery of organs and tissues for people in need of life-saving and life-improving transplants. We are committed to increasing awareness and fostering understanding of organ and tissue donation among health care professionals and the general public. With respect and compassion, we will provide individuals and their families with the knowledge required to make informed decisions about donation.
The Desmoid Tumor Research Foundation
(DTRF) seeks to advance the desmoid tumors, by:
* Funding research related to the diagnosis and treatment of desmoid tumors
* Facilitating and enhancing the dialogue among members of the medical communities about research related to desmoid tumors.
* Providing informational support for desmoid tumor patients and their and heightening awareness of desmoid tumor diagnosis and treatment. We are certain that our efforts to fund the most cutting-edge desmoid tumor research treatment options and will bring us closer to our ultimate goal -- a cure.
I was diagnosed with FAP (a genetic disease that causes colon cancer) when I was 23 years old. Three years later I decided to be proactive about my health and had a total colectomy to prevent my precancerous polyps from becoming cancer. Following this surgery I had routine endoscopes to keep an eye on things. After one of these endoscopes, I developed abdominal pain. A CT scan was done, showing an abdominal desmoid tumor. My doctor said that he would just do a scan every year. About 9 months later I had more pain. The CT scan showed that the tumor doubled in size (now 7cm). Six months went by before I was put on chemo. After 2 months of chemo the tumor had grown so large that I was often approached by strangers asking when I was due. After my final scan that summer, I was given a few weeks to live.
I was not ready to go. We found a doctor who removed the tumor (it was about 15lbs at this point) and with it went my uterus, ovaries, abdominal wall muscle, and all but 50cm of intestines. I was reliant on TPN (IV nutrition) for just under 2 years. There were some setbacks, and my liver started showing signs of failure from the TPN. It was then decided that I would be put on the waiting list for an intestinal transplant. Four months later I got the call.
It has been 1-1/2 years since my transplant. I am able to live my life now without worrying about getting a line infection. I can eat food and actually get nutrients from it. I'm not constantly in and out of the hospital. Before I got sick I never really understood how much is taken for granted. There is so much to be thankful for.
We don't have a long time on this earth, and I've been given a second chance at mine. I try to live everyday to the fullest. Thank you Maddalena for letting me tell my story. You are such a strong person, spreading awareness for Desmoids and organ donation. We are so lucky to have you helping us fight this fight! I never had the opportunity to meet your brother, but he must be so proud of all you have done. Thank you!
My name is Kim, I have four children ages 2. 9, 13 and 16. In the summer of 2010, when my fourth child was just 18 months old, I noticed a "nodule" in my abdomen just below my navel. Even though it didn't hurt, I went to my doctor to have it checked out. After a first MRI where I was told it was likely "inflammation" from my fourth caesarian section, it tripled in size over the next three months.
By November of 2010, it has grown to be the size of a lemon. After a second MRI confirmed dramatic growth and the word "tumor" was used to describe it, I began consulting oncologic surgeons. Two local well respected surgeons agreed that it was probably a desmoid tumor or possibly a more aggressive form of sarcoma and should be swiftly excised with clear margins. I had surgery at the end of November 2010. The surgery removed 3/4th of my left rectus muscle and left me with a scar from my navel to my pelvis and abdominal wall deficits requiring mesh reinforcement.
The surgeon said the tumor was starting to grow into my peritoneum (the abdominal cavity) - it seems we caught it just in time. The pathology showed it to be a desmoid tumor, but I was devastated to hear the margins were NOT clear. So I asked my doctor what he recommended to avoid reoccurrence.
Although I had researched desmoid tumors and knew information was sparse, I was devastated again when my doctor told me that there was no research or data available about whether any treatment: radiation, chemo or NSAIs would reduce the chances of reoccurrence. Apparently, there are not "enough" desmoid patients to justify the kind of government funded research often undertaken for more common tumors.
Maybe it seems that way - but if the desmoid patient is you or your child, parent, spouse or friend - it sure feels like "enough."
Because desmoid tumors have a high reoccurrence rate, I now have scans every 3 months. They take about an hour and a half and require an IV, but I've has two good reports and feel fortunate to be well enough to get back to my life and business as usual.
Although I was daunted by the lack of information about this disease, my feelings of helplessness and hopelessness led me to look for ways to have a positive impact for patients facing desmoids and for myself. I've been a fitness enthusiast, jogger and fitness instructor all of my adult life. So I was elated to find Lap4Life, Running for Answers and the Desmoid Tumor Research Foundation. Finding other patients and families looking for answers and willing to work together to find them gave me purpose and hope. Something about events with strong momentum and true spirit give strength. I feel so fortunate to have been a part of these fundraising events in 2011. I hope we can look forward to a future where no one faces surgery, limitations or loss of life from desmoid tumors. I am so so grateful to everyone who cares and takes part in raising funds for research.
At the age of 7, Brianna was getting a routine school physical when doctors detected an irregular heartbeat. Upon further testing, she was diagnosed with dilated cardiomyopathy, the result of a virus that settled in her heart.
Between the ages of 7 and 13, she spent over 100 days in the hospital undergoing many different procedures and trying different medicines to try to control her irregular heartbeat. Unfortunately these treatments & medications would work temporarily, but never enough to completely regulate Brianna's heartbeat and the underlying cardiomyopathy would always prevail.
Over the years, Brianna's heart muscle continued to deteriorate as a result of being overworked from all of the extra and irratic heart beats and rhythms she had. During this time Brianna was fortunate enough that the rest of her body was healthy enough to compensate for her weakened heart so she never really felt sick and having a grossly irregular heartbeat became a normal feeling for her. On the surface she appeared fine but on the inside she was slowly & silently approaching heart failure. Brianna continued to attend school and have as much of a normal life as possible amid the frequenthospital stays and activity restrictions she had due to her heart condition. On June 10, 2011, Brianna was excited as it was the last day of middle school classesand the day of her eighth grade dance. Brianna went to school as usual and then went to the eighthgrade dance. It was late at night, but Brianna was feeling fine and sat down at the dining room table to do some art work. She started feeling lightheaded and suddenly went into cardiac arrest. When she arrived at the hospital, her heart function was 11%. She was in heart and lung failure and doctors were uncertain about her brain function because she had been in cardiac arrest for 8 minutes. The next few days were touch & go as her heart failure progressed and she went into cardiac arrest again at the hospital.
On June 13, 2011 Brianna had her first open heart surgery; a mechanical heart called an LVAD that would keep her alive until a donor heart became available. On June 24, 2011, just weeks before her 14 birthday, Brianna received a heart transplant that saved her life. She recovered seemlessly and was able to start high school in September with the rest of her class.
Brianna has her life back; she is thriving since her heart transplant and she is able to do all activities without any restrictions. She maintains an "A" average in school and is committed to educating people and raising awareness about organ donation with the hopes of increasing the number of registered organ donors so that more lives can be saved. One year later, on June 23, 2012, Brianna celebrated her one year "Heart-aversary" at Lap4Life, completing the 4 mile trail with ease. A very special and extraordinary day filled with wonderful people celebrating life, Brianna and her friends and family look forward to spending every Heartaversary at Lap4Life!
November 22, 2010 our son, Sean Cadden, was diagnosed with Acute Lymphoblastic Leukemia (ALL). It was found by chance after he broke a tooth on the playground. Three and a half years of medication, chemotherapy, lumbar punctures and bone marrow biopsies followed. In May 2014, Sean got the “all clear” from the doctors and his medical port was removed.
In August 2014, our family planned a two week beach vacation to celebrate. Upon returning from vacation, Sean complained of pain in his legs and feet. We brought him to the podiatrist and nothing significant was found. We called Sean’s oncologist who suggested we test Sean for Lymes disease and mono, again nothing. A bone marrow biopsy was done to “rule out” a relapse. Our worst fears came true when it came back positive for cancer.
Treatment for this type of relapse is a stem cell transplant, more commonly know as a bone marrow transplant. Sean initially spent four weeks in the hospital from August to September undergoing high dose chemotherapy and three separate surgeries. Then the search for a stem cell donor began. The first step was to test Mom, Dad and his sister, Marijane. The doctors were not optimistic for a related match and suggested sending Sean’s needs to the National Bone Marrow Registry. Finally, a glimmer of hope appeared as Sean’s sister Marijane (MJ) was identified as a perfect ten-point match. MJ was scared. She endured repeated blood work and painful pre-medications in order to prepare for the harvest.
On November 1, 2014, Sean was admitted to the hospital to prepare for his transplant. He underwent seven days of more chemotherapy and an additional five days of radiation; Sean had never received radiation before. On November 13, Sean’s Birthday, MJ was admitted for her big donation. Two doctors drew her marrow and Sean received that marrow the next day.
In total, Sean spent eleven and half weeks recovering in the hospital. He was released on Jan 21, 2015. He still has a long road ahead of him including twice weekly trips to the doctor and home medications including daily IV’s. The doctors keep a close eye on him and on all accounts he is doing very well.
The following organizations will be involved in the 2015 Health Fair:
Advanced Podiatry of the Hudson Valley
NY Organ Donor
“Increase awareness about desmoid tumors and work to raise funds for desmoid tumor research and organ donation.”
We are hopeful that the funds raised will be instrumental in finding a cure for desmoids tumors and to improve outcomes for organ donor recipients.
Prizes for the top overall male and female finishers.
Trophies for top 3 male and female finishers in this categories: 12 and under; 13-18; 19-29; 30-39; 40-49; 50-59; 60-69; 70+
Trophies for top two boy and girl finishers in this categories: Kids 4 and under; 5 - 6; 7 - 8; 9 - 10
Pre Packet Pickup:
Friday night before the race June 19th at the Large Pavilion at Chadwick Lake between 5:30-7:30pm. Silent auctions items will be out to view. Raffle tickets and t-shirts will be for sale.
Parking: There will be shuttle service from off site parking to Chadwick Lake
Bag Pick up opens 7:00am
Shirts to the first 400 pre-registered and race bags to the first 200 adult racers who pick up their numbers.
Raffle/ Silent Auction: opens 7:30am closes at 11:30am Sharp!
Remember to place your bids 8:15am Zumba by Jenn Santana in the Hockey Arena
9:00 Opening Ceremony at start line
9:15am Run starts
9:20am Walk Starts
10:00am Matt Booth Performs Live
10:40am Award Ceremony at Large Pavillion
Approximately 11:15 following award ceremony: KIDS FUN RUN!!!
Challenges are for runners only
Trophies awarded to the Top Team within each category and Fastest individual within each category only!
You will need at least 3 members of your corporation to participate in the 4 mile run, racing against other corporations and against one another.
You will be competing for overall fastest corporate employee and fastest corporation.
The fastest team will be determined by an average of the fastest three competitors, so the more entrants you have the better your chances. When registering for a team make sure you are all using the same Team Name
School / Teacher Challenge
You will need at least 3 teachers from your school to partake in the challenge.
You will be racing against other schools and against teachers in your school in the 4 mile run, competing for overall fastest school and overall fastest teacher.
The fastest team will be determined by an average of the fastest three competitors, so the more entrants you have the better your chances. Only active teachers may participate in the School Challenge. When registering for a team make sure you are all using the same Team Name
Need at least 3 officers who hold badges to participate from each department.
You will be participating in the 4 mile run, competing for overall fastest officer and overall fastest department.
The fastest team will be determined by an average of the fastest three competitors, so the more entrants you have the better your chances. Only active police officers may participate in the Police Challenge. When registering for a team make sure you are all using the same Team Name
You will need at least 3 armed force members from your branch or organization to participate in the challenge, racing against other teams, organizations or military branches for overall fastest armed forces member and overall fastest military team.
You may create your own teams as long as you let the race organizers know how you are planning on participating, the fastest team will be determined by an average of the fastest three competitors, so the more entrants you have the better your chances. Only active miltary personel may participate in the Military Challenge. When registering for a team make sure you are all using the same Team Name
You will need at least 3 members from your fire company or organization to participate in the challenge.
You will be racing against other fire houses and each other, competing for overall fastest fireman and overall fastest fire company team.
The fastest team will be determined by an average of the fastest three competitors, so the more entrants you have the better your chances.
Walk is now 4 miles around the lake instead of a 5 K out and back.
Route 300, Newburgh, NY 12550
This year we want to give everyone a chance to help join in and support our cause.
One way to do that is to encourage people to obtain sponsors for their trek around the lake.
There will be a very nice prize for the person who collects the most sponsorship support (in terms of total dollars collected).
Please let us know if you need more information to help you collect sponsorships.
Videos of past Lap4Life events
1st Annual Lap4Life 2009 Event
2nd Annual Lap4Life 2010 Event
Dr. Angelo Casabianca Memorial Video
Lap4Life Campaign 2011
3rd Annual Lap4Life Run/Walk 2011 Event
Lap4Life CBS Interview - June 19, 2011
4th Annual Lap4Life Run/Walk 2012 Event
5th Annual Lap4Life Run/Walk 2013 Event
6th Annual Lap4Life Run/Walk 2014 Event
Click below to see photos from past Lap4Life events.
Please visit lap4life.smugmug.com to view more photographs and to purchase your own copies. All proceeds go to The Angelo Casabianca Desmoid Tumor Research Fund.
Race day photos 2009
Race day photos 2010
This year we want to give everyone a chance to help join in and support our cause.
One way to do that is to encourage people to obtain sponsors for their trek around the lake, there will be a very nice prize for the person who collects the most sponsorship support (in terms of total dollars collected).
Music and Entertainment
54 North Plank Road,
Newburgh, NY 12550
Race Course Coord.:
Lynn R Warren