Upcoming RUN Involved Events and Projects

March 5, 2018 8:40 pm No Comments 13

 

Rare and Undiagnosed Network (RUN), a rare and undiagnosed disease patient advocacy organization, and the rare disease community of more than 350 million people worldwide, are preparing for a special upcoming few months of celebrations in honor of the rare and undiagnosed community.


Governor Herbert Declarations:

Rare Disease Day on February 28th & 

Undiagnosed Rare Disease Day on April 29th

   


UPCOMING EVENTS & PROJECTS

Utah Jazz vs. Sacramento Kings

Saturday, March 17, 2018

7:00 PM MST

Vivint Smart Phone Arena

Address: 301 S Temple, Salt Lake City, UT 84101

The Utah Jazz  will honor 30 rare and undiagnosed children as well as their siblings on the court as National Anthem Buddies! We will also have rare angels honored by their family members by holding their photographs. Alec Burks and Ricky Rubio have donated 100 tickets through the NBA Player Ticket Donation Program!

RUN’s NBA Initiative


April 27th: Undiagnosed Presentation to the University of Utah Medical School

RUN will present to the University of Utah Medical School’s Pediatric Interest Group via their Chair, Andrew Carey. Andrew Carey is the son of Dr. John Carey, our geneticist here at Intermountain Primary Children’s Hospital.

Friday, April 27th

12:00p – 1:00p

Moderator: Dr. John Carey

Speakers: Season Atwater, Anne Bruns, Jenny Frisk and Gina Szajnuk

 


April 29th: Undiagnosed Rare Disease Day

In the United States alone, there is a huge population of patients with a genetic disease that are not diagnosed. We need to eliminate the diagnostic odyssey, which causes physical, emotional and financial ruin for these families, by making next generation sequencing available to families immediately. The importance of national and international data sharing is critical to improve diagnosis for these patients. We need to have collaboration, collaboration, collaboration. The campaign targets primarily the general public and also seeks to raise awareness among policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in undiagnosed rare diseases and the world of genetics. Since 80% of rare and undiagnosed rare diseases have identified genetic origins, it is imperative to raise awareness for the importance of genetics in the diagnostic odyssey of undiagnosed rare disease patients. As of now, being undiagnosed is our diagnosis and we need to be recognized as a distinct population. #UndiagnosedDay


PAST EVENTS & PROJECTS

February 28th was the official Rare Disease Day trademarked by Eurordis with the National Organization for Rare Disorders (NORD) being the United States sponsor, RUN is a member of NORD and their event here in Utah will be at the State Capitol. Ava Szajnuk will be speaking at the event! #RareDiseaseDay #ShowYourRare


Rare Disease Congressional Caucus Briefing

On February 28th in Washington D.C., RUN is a sponsor of the upcoming Rare Disease Congressional Caucus Briefing: Rare Disease Week on Capitol Hill through the Rare Disease Legislative Advocates, a program of the EveryLife Foundation for Rare Diseases designed to support the advocacy of all rare disease patients and organizations. Gina will be speaking at the Caucus about Diagnostic Challenges and Policy Solutions.

Rare Disease Congressional Caucus Briefing
Wednesday, February 28th, 2018
12:30 – 1:45 pm EST
Russell Senate Office Building Room 325, Washington, DC 20002

Livestream Link

Presented by Retrophin


Utah Rare Action Network Advocacy Event

“On behalf of the National Organization for Rare Disorders (NORD) Utah Rare Action Network and our Volunteer Rare Action State Ambassadors, Julie Potter and Jennifer Summers, we would like to cordially invite you to join us in celebrating Rare Disease Day at the capitol in Salt Lake City, February 28, 2018.

Rare Disease Day is an annual awareness day that is dedicated to raising public understanding of rare diseases and celebrated on the last day of February in over 85 nations around the world. This event is an opportunity for you to hear from elected officials, patients, caregivers, medical professionals, researchers, and industry representatives about rare diseases and the daily challenges many patients and their families face here in Utah.”

When: Wednesday, February 28, 2018

Where: Utah State Capitol

350 State Street, Salt Lake City, UT

Time: .3:00pm-5:00pm MST

We hope you are able to join us,

please CLICK HERE to register today!


Season Atwater, Season Atwater Photography and Aware of Angels, will be displaying her new Utah Rare Photography Project this month. Her participants are all adults living with a rare or undiagnosed rare disease.  Gina was honored to be selected as one of the adults as well as one of RUN’s Advisory Board Members, Jenny Frisk.


4th Annual Utah Rare Symposium

Saturday, March 3, 2018

11:30 AM – 5:00 PM MST

Marriott Hotel

480 Wakara Way

Salt Lake City, UT 84108

We invite patients, parents, researchers, clinicians, and advocates to join us for our annual Utah Rare Symposium on Saturday, March 3, 2018. Adults, children and families are all invited to attend. Our symposium provides opportunities to learn together, support each other, connect with resources and network. Enjoy some hors d’ oeuvres and register on site for FREE in between 11:30am and 12:30pm. Registration includes free T-shirts for attendees. Various sizes will be available on a first come first served basis. 2018 Utah Rare Chair: Tristin West & Utah Rare Executive Committee: Season Atwater, Anne Bruns and Gina Szajnuk.

Thank you to all of our 2018 sponsors! A special thank you to Mark Kristensen, Angel’s Hands Foundation, for helping out with the sponsorships.

As always, a very special thank you to Cristina Might for her vision and creating Utah Rare back in fall of 2014!

Registration Link


Milwaukee Bucks vs. Indiana Pacers

Friday, March 2nd, 2018:

7:00 PM CST

Bradley Center

Address: 1001 N 4th St, Milwaukee, WI 53203

RUN families will enjoy a Buck’s suite! 18-20 tickets and $250 worth of food/drinks!

In addition to nationwide events, this year RUN has signed up with Global Genes, RUN is a member of their RARE Foundation Alliance, and the Festival of Children Foundation to create the first-ever RARE Carousel of Possible Dreams. The inaugural fundraising event will be held February 28, 2018 in San Francisco, at the Children’s Creativity Museum, and will provide a unique opportunity for the more than 30 participating rare disease foundations to raise awareness and funds for rare diseases nationwide. The fundraiser will run through the end of March. RUN’s funds will go directly to rare and undiagnosed families to help pay their medical bills, medical travel bills as well as to have genetic sequencing.  RUN’s Co-founder, Gina Szajnuk (Zanik), is married to the Assistant GM of the NBA Utah Jazz, Justin Zanik. They have three children that suffer from an undiagnosed rare disease and have lived in a diagnostic odyssey for over five years. Please learn more about their journey.

Link to RUN’s RARE Carousel of Possible Dreams


About RUN
RUN stands for Rare & Undiagnosed Network. We’re a group of advocates, patients, families, researchers, healthcare providers who share the same mission: To empower rare and undiagnosed patients and their families with genomic information and community through advocacy, networking and support. www.rareundiagnosed.org