UPCOMING Events

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September 18-20 2019

Global Genes RARE Patient Advocacy Summit

All day

Sheraton San Diego Hotel and Marina San Diego, CA

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September 18-20 2019

Global Genes RARE Patient Advocacy Summit

Join us at this exciting RARE event!

  • A jam-packed program filled with TED-style keynotes and five tracks of compelling educational content ranging from the latest in care to cutting-edge research and therapies.
  • 100 exhibits featuring programs and services for the rare disease community.
  • Workshops, dinners and networking activities to inspire conversations and spark collaborations.

All day

Sheraton San Diego Hotel and Marina San Diego, CA

September 18 2019

RARE Entrepreneur Boot Camp

9am - 4:30pm

Sheraton San Diego Hotel and Marina San Diego, CA

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September 18 2019

RARE Entrepreneur Boot Camp

As a kickoff to Global Genes Rare Patient Advocacy Summit, T.E.A.M. 4 Travis will attend the special Invitation-Only Rare Entrepreneur Bootcamp. The day is geared to help patient advocates who are funding research to develop more structure and coordination. It offers insight and guidance into a variety of nonprofit topics, including research and development, financial management, corporate governance, legal issues, growth and expansion. We're so excited to be part of this informative day. 

9am - 4:30pm

Sheraton San Diego Hotel and Marina San Diego, CA

Saturday October 19 2019

Community Yard Sale

7AM - 12PM

Thompson Funeral Chapel Goodyear, AZ

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Saturday October 19 2019

Community Yard Sale

Together with Sean and Cynthia Thompson and their staff at Thompson Funeral Chapel, we invite you to join us at the 2nd Annual Community Yard Sale. All proceeds will benefit T.E.A.M. 4 Travis, so come shopping! There will be lots of great bargains, from furniture to household goods, family clothing, games and toys. If you have items to donate for the Sale, please drop them off to Thompson Funeral Chapel Monday - Friday from 9AM - 5PM up until October 15.

7AM - 12PM

Thompson Funeral Chapel Goodyear, AZ

Event Partners

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Past events

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August 15 2019

WILDFLOWER BREAD COMPANY NEIGHBORHOOD NIGHT

Wildflower Bread Company locations - Gilbert, AZ & Goodyear, AZ

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August 15 2019

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, so we'll receive 25% of the proceeds from that location. At the Goodyear location, our goal was at least 101 participants, to maximize the proceeds received. 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 probably in the top 3 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!

Wildflower Bread Company locations - Gilbert, AZ & Goodyear, AZ

July 29 - September 8

RARE ACROSS AMERICA

United States Congresspersons Arizona District Offices

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July 29 - September 8

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. 

United States Congresspersons Arizona District Offices

July 31 2019

RARE ACROSS AMERICA

US Representative Debbie Lesko's Arizona District Office

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July 31 2019

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. 

US Representative Debbie Lesko's Arizona District Office

May 18 2019

RARE on the ROAD

History Colorado Center Denver, CO

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May 18 2019

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.

History Colorado Center Denver, CO

February 28 2019

Rare Disease Day

All day

National Institutes of Health Washington, DC

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February 28 2019

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.

All day

National Institutes of Health Washington, DC

January 23 2019

Selleri Lab UCSF Visit

University of California, San Francisco Medical School

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January 23 2019

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.

University of California, San Francisco Medical School

November 5 2018

Casanova Lab Visit

The Rockefeller University - New York, NY

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November 5 2018

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.


The Rockefeller University - New York, NY