UPCOMING EVENTS
October 8 - 9, 2020
|
Rare Diseases and Orphan Products Breakthrough Summit
This will be our first opportunity to attend an event hosted by National Organization for Rare Disorders (NORD). Even with the “extraordinary” year we’ve experienced, millions of Americans still are living with a rare disease, still hoping and praying that somehow, there will be a new discovery, a new treatment and new hope. The show must go on, with the need for better research, advocacy and funding more critical than ever. NORD promises to continue supporting the rare disease community by bringing together an amazing panel of health experts, patient advocates and industry leaders in this two-day virtual summit. |
Wednesdays
|
Newborn Screening Bootcamp
TEAM 4 Travis’s mission is to prevent childhood death from Isolated Congenital Asplenia. Sounds pretty simple, right? There’s so much more to it. As the first US nonprofit dedicated solely to saving children born without their spleens, we must blaze new trails. How do we do that? One way is educating ourselves about Newborn Screening by attending the 2020 Newborn Screening Bootcamp, co-hosted by The Everylife Foundation and Baby’s First Test. This 5-part series begins September 30th and offers us access to experts from the American College of Medical Genetics and Genomics, the Advisory Committee on Heritable Disorders in Newborns and Children, and experts in the fields of biotech, pharma and legislative advocacy. |
Saturday
|
T.E.A.M. 4 Travis Inaugural Golf Tournament
We're looking ahead with anticipation for our May 15, 2021 Inaugural Golf Tournament. We hope you'll be able to join us! More information and registration details COMING SOON! We greatly appreciate your continued support of our cause, as with postponing our inaugural golf tournament for 2020, we will lose our main source of fundraising revenue supporting education and research for Isolated Congenital Asplenia. If you are willing and able, we would be ever so grateful if you would still consider contributing in any way to help us meet our goal. It is critical we stand together so we can emerge even stronger. With your support and commitment, we remain steadfast in our efforts to raise awareness about Isolated Congenital Asplenia, provide community and medical education, and work with our doctors and scientists to continue researching asplenia and discovering a diagnostic tool to prevent childhood death. We look forward to staying connected and providing you with updates on the progress of our mission. We are deeply grateful for your generosity, and for being a treasured member of the T.E.A.M. 4 Travis community. |
Rare disease advocacy Partners
PAST EVENTS
August 17, 2020Portillo's of Avondale
|
Portillo's For Good Fundraiser in honor of Travis's 6th Birthday
If you knew Travis, you knew he loved a good time. His infectious giggle and zest for life could brighten the darkest day. He loved celebrating friends' birthdays almost as much as he did his own, laughing, working the crowd, enjoying good food and LOVING LIFE. It is the legacy of his joyful spirit that inspires us to make sure children with Asplenia get more than 4 birthday parties here on earth. In the midst of a pandemic, we still needed to honor Travis's 6th birthday, and to find new ways to raise money to support our efforts for advocacy, awareness and funding research. We partnered with the great team at Portillo's of Avondale through their Portillo's for Good Fundraiser. On August 17, Portillo's donated 20% of the proceeds on any order where the guest mentioned T.E.A.M. 4 Travis. Thanks to Portillo's managers Erin, Scott, Whitney and all the staff who were on hand to ensure all our friends had a safe, sanitized restaurant experience. They gave us the opportunity to do something good for T.E.A.M. 4 Travis while connecting with our community and sharing how important it is we do something to change the way ICA is diagnosed in children. Travis would say "CHEERS" to that! |
July 17, 2020The Wigwam Resort Litchfield Park, AZ
|
Congressional Recognition from US Representative Debbie Lesko
Monica Yelin, the Community Liaison for US Representative Debbie Lesko presents TEAM 4 Travis Congressional Recognition for our efforts to raise awareness about Isolated Congenital Asplenia. In addition to raising awareness about this rare disease, we are working to raise funds for medical research and development of a Newborn Screening to identify ICA in babies before it becomes a fatal outcome. Board Members Christine Lizotte Marler, Allison D'Ambrosio Bones and Olivia Bien accepted the award. The Board Members of TEAM 4 Travis express sincere gratitude to Congresswoman Lesko and Ms. Yelin for this honor. We would like to give a special thank you to our friends at The Wigwam Resort. The Wigwam is the host site for TEAM 4 Travis's May 2021 Golf Tournament. Their staff are incredibly kind and huge supporters of our mission. At the last minute, Ms. Yelin advised there was a scheduling conflict with Congresswoman Lesko's Arizona office and asked us to arrange another place to meet. We reached out to our friend Marie Simpson, Wigwam's National Sales Director, to ask if we could sit in the lobby for our meeting (pandemic precautions). Ms. Simpson confirmed they were open and they would be happy to host us. Our sincere thanks to Ms. Simpson and her colleague Mike Riccio, Director of Catering and Convention Services for providing us a beautiful meeting room and gracious hospitality. We were so happy they could join in our meeting. |
February 25 – 28, 2020Washington, DC
|
Rare Disease Week
Rare Disease Week was a whirlwind of events and opportunities to raise awareness for Isolated Congenital Asplenia and advocate for Congressional support for the Newborn Screening Saves Lives Reauthorization Act (Senate Bill S. 2158) and the creation of the FDA Rare Disease Center of Excellence. From Tuesday’s Rare Disease Congressional Caucus Briefing to Wednesday’s Legislative Conference to Hill Day on Thursday where we shared our Rare stories with Senator Martha McSally and other Congressional staffers and finally Friday’s Rare Disease Day at the National Institutes of Health (NIH), we shared Travis’s story and why it is so crucial to support better research for Isolated Congenital Asplenia and the 7,000 other known rare diseases that impact 30 million Americans. |
Saturday December 14, 2019Litchfield Park, AZ
|
Christmas in the Park
During the wonderful Christmas in the Park community festival, T.E.A.M. 4 Travis provided information to our neighbors regarding Isolated Congenital Asplenia and our mission. From our information booth, we told Travis's story, providing education to our neighbors about this rare disease. We shared how Travis's Travelling Stones are going global, raising awareness as people take these kindness rocks on their journeys around the world. As part of our outreach, we invited kids to color pictures of Travis's rocks with how they would decorate a kindness rock. A special young man named Dillon worked so hard to create this beautiful picture. As he concentrated on making something beautiful for Travis, he listened to me tell Travis's story to some adults. When he was done coloring, he took out his wallet, gave a dollar and warmed our hearts with his thoughtful compassion. Kudos to our new friend Dillon for sharing his heart, his art and some of his allowance. His parents need to know what an awesome son they have! |
Saturday
|
Community Yard Sale
Sean and Cynthia Thompson and their amazingly kind and compassionate staff from Thompson Funeral Chapel chose T.E.A.M. 4 Travis as the beneficiary of their 2nd Annual Community Yard Sale. Our sincere gratitude goes out to Sean & Cynthia, Olivia, Amber, Angelica, Nancy, Judy, Randy, Kelly and Linda for their hard work. They worked tirelessly to collect & organize items for the sale, advertise & help us promote the event. Their tremendous efforts helped double the amount raised during their inaugural event. At the end of the day, excess inventory was donated to various local charities, including Goodwill, Hope's Closet and the St John Vianney Blanket & Coat Drive Benefiting Andre House. |
October 9-12 2019Cancun International Convention Center, Cancun, Mexico
|
Latin American Society of Immunodeficiencies (LASID) Conference
This conference provided our first opportunity to advocate internationally for Isolated Congenital Asplenia. We connected with our Scientific Advisory Board Member Jean-Laurent Casanova, MD, PhD and heard him speak on Inborn Errors of Immunity. We spoke with Dr. Antonio Condino-Neto, Professor of Experimental Medicine at Institute of Biomedical Sciences, University of São Paulo, Brasil. He presented on the importance of Newborn Screening, sharing a quote from Wilson & Junger from 1968. This quote is a relevant today as it was a half century ago. "The object of screening for disease is to discover those among the apparently well who are in fact suffering from disease." It was an honor to connect with other immunodeficiency advocates such as Fred & Vicki Modell of The Jeffrey Modell Foundation and Mayela Garcia of Iniciativas ALAS. An amazing educational and networking opportunity! |
September 18-21 2019
Sheraton San Diego Hotel & Marina, San Diego, California
|
Global Genes Rare Patient Advocacy Summit 2019
Over 1,000 attendees participated in this year's Summit. From Wednesday's kickoff of the Entrepreneur Boot Camp through the final Foundation Alliance Meeting on Saturday, we were busy meeting fellow Rare Disease patients, parents, industry partners and medical experts, some with a rare story of their own. We learned from experts like Mark Dant and Dan Hinmon about effective fundraising and building a strong social media presence. We heard from many doctors and researchers like Manish Butte and Shimul Chowdhury on the latest cutting-edge research and therapies. We connected with rare disease patients like Nathan Peck and Kyle Bryant, parent advocates like Amber Freed, Katie Stevens and Carrie Ostrea. There was an unparalleled sense of community and support unlike anything we'd ever seen. People shared stories, hugs, helpful hints and important contacts. We can't wait to go back next year! |
August 15 2019Wildflower Bread Company locations - Gilbert, AZ & Goodyear, AZ
|
WILDFLOWER BREAD COMPANY NEIGHBORHOOD NIGHT
On the eve of Travis's 5th Birthday, we held our first official fundraiser. This great program provides a percentage of the proceeds to a pre-approved charity, based on the number of Neighborhood Night flyers presented with individual sales tickets. At the Gilbert location, 37 friends came out to have dinner and support T4T. At the Goodyear location, our goal was at least 101 participants. Thanks to promotional help from The West Valley View and amazing support from our friends, family, neighbors, colleagues, and church families we easily exceeded our goal, with approximately 140 sales tickets. The Goodyear store manager Curtis said our crowd was among the busiest of all the Neighborhood Night events he's worked! T.E.A.M. 4 Travis sends a million thank you's to the Gilbert/Rivulon staff (Manager Brittany and "Breadheads" Kellen, Jared, Jeff, Dim, Hunter, Josh) and the Goodyear staff (Manager Curtis and "Breadheads" Vicente, Brandon, Mina, Linda, Jacob, Alex, Conor and Hunter) for all of their hard work to help make this a smashing success! |
July 29 - September 8 2019United States Congresspersons Arizona District Offices
|
RARE ACROSS AMERICA
Thanks to Rare Disease Legislative Advocates (part of The Everylife Foundation), T.E.A.M. 4 Travis participated in RARE ACROSS AMERICA during Congress' Summer Recess. We met with Arizona Congresswoman Debbie Lesko and her Deputy District Director Chelsea Lett to discuss Rare Diseases like Isolated Congenital Asplenia. We shared Travis' story and invited Representative Lesko to join the Rare Disease Congressional Caucus to help her Arizona Rare Disease families have a stronger voice on Capitol Hill. Our second stop on our Rare Across America journey found us partnering with fellow Arizona Rare Disease moms Aimee Griffith-Johnson and Jackie Hoffman and Rare Disease patient Jesica Silla to visit with the staff at Senator Martha McSally's Phoenix office. During the meeting with Outreach Coordinator Matthew Schiumo and East Valley Outreach Coordinator David Romney, we presented the top 3 current issues so important to Rare Disease Legislative Advocates. We asked for Senator McSally's support for the Rare Disease Burden Study and co-sponsorship of Senate Bill S.2158, the Newborn Screening Saves Lives Reauthorization Act. We also urged Mr. Schiumo and Mr. Romney to encourage Senator McSally to join the Rare Disease Congressional Caucus. By doing this, Senator McSally can provide a stronger voice on Capitol Hill for her Arizona constituents living with or fighting for those with rare diseases. It was a great meeting filled with education and exchange of information. Our final Rare Across America meeting took place with Michelle Coldwell, Senator Sinema's Constituent Affairs Representative, and intern Ezekiel. During the meeting, we shared our rare stories, expressed gratitude for Senator Sinema's involvement in the Rare Disease Congressional Caucus and requested her staff ask her to cosponsor S.2158, the Newborn Screening Saves Lives Re-Authorization Act. |
May 18 2019History Colorado Center Denver, CO
|
RARE on the ROAD
At this Rare Disease Leadership Tour sponsored by The Everylife Foundation and Global Genes, T.E.A.M. 4 Travis was honored to have our logo featured on the Welcome Poster! During the day, Board Members Alicia Torres and Allison (D'Ambrosio) Bones learned so much about Rare Disease Advocacy. Everylife's Executive Director Mark Dant shared his very personal and powerful story of how he and his wife Jeanne refused to accept their son Ryan's diagnosis (and potential death sentence). They started The Ryan Foundation and to date, have raised over $3 million dollars for clinical trials and treatment for Ryan's rare disease MPS-1, saving not only Ryan's life but hundreds of other children. We also heard from Ashley Yee of Global Genes on how to effectively tell your rare disease story. Finally, we picked up some great tips from Mayo Clinic Social Media Network Director Lee Aase on creating a strong social media presence. |
February 28 2019All day
National Institutes of Health Washington, DC |
Rare Disease Day
In early February, great friends invited me to visit and attend Rare Disease Day at the National Institutes of Health. It was an amazing day listening to speakers like NIH Director Dr. Francis Collins, patients, physicians and advocates and learning more about the rare disease community. Dr. Casanova graciously arranged a meeting with his friend Dr. Dan Kastner, of the National Human Genome Research Institute. |
January 23 2019University of California, San Francisco Medical School
|
Selleri Lab UCSF Visit
Dr. Licia Selleri invited T.E.A.M. 4 Travis to present to her lab team and department chair Dr. Ophir Klein at UCSF. In the Selleri Lab, they study the genetic and regulatory basis of how elaborately patterned tissues form during embryonic development and evolution. Essentially, they use the mouse model to get a better understanding of genetics in embryonic development, including what causes the spleen to not develop properly. Despite the tragic reason behind the visit, it was so rewarding to interact with these wonderful geneticists and researchers, bridge the gap between science and humanity and learn so much more about their work on genetic birth defects like Isolated Congenital Asplenia. |
November 5 2018The Rockefeller University - New York, NY
|
Casanova Lab Visit
T.E.A.M. 4 Travis didn't even officially exist when we visited Dr. Jean-Laurent Casanova at the St. Giles Laboratory of Human Genetics of Infectious Diseases at The Rockefeller University in Manhattan for DNA testing. Dr. Casanova and Dr. Selleri were colleagues at Cornell Weill School of Medicine in 2012 when they discovered the mutation in the Nkx-2.5 gene that causes Isolated Congenital Asplenia. From this visit with Dr. Casanova, our vision of doing something to help stop children from dying from ICA came into focus. The day was filled with information, hope and encouragement that we could start this foundation. New to the journey of being a Rare Disease Patient Advocate, our only regret of the day was we didn't think to ask Dr. Casanova to pose for a picture with us. |