Blog

2018 NORD Summit: An Advocate’s Perspective

By Leslie Condon, TargetCancer Foundation Advocacy Council Chair

The National Organization for Rare Disorders was formed after a small coalition of rare disease patients came together in the late 1970’s and became a driving force that helped establish the 1983 Orphan Drug Act. Since then, the number of NORD patient organization members has grown to 280, including twenty-one rare cancer organizations in NORD’s Rare Cancer Coalition. Within NORD’s thirty-five year history, the organization established the first patient assistant program, and helped advocate and legislate for new laws, including the Rare Diseases Act in 2002 and the FDA Safety and Innovation Act in 2006. Continue reading

Team TargetCancer Foundation returns to the 2019 Boston Marathon!

We are happy to announce that Team TargetCancer Foundation will be making its fifth appearance in the Boston Marathon in 2019! We are excited to return to this historic race once again, and we are so pleased to announce the runners who have been selected as members of our team: Brendan Carey, Jenny Ross, and DJ Webster. These three individuals are incredibly passionate and driven- you can read their stories and support their efforts here: https://www.crowdrise.com/o/en/campaign/teamtcf2019.

See you at the finish line on April 15, 2019!

 

 

Facebook Fundraisers

Did you know that Facebook makes it incredibly easy to engage your community to raise funds for TargetCancer Foundation? You can create a fundraiser to celebrate your birthday, anniversary, or for no other reason than to support rare cancer research and patient support!

Rally your community through these few easy steps.

1. Go to www.facebook.com/targetcancer/fundraisers

2. Click the Raise Money button, and then Get Started.

3. Set a fundraising goal, and an end date for your fundraiser. In our experience, 1-2 weeks is an ideal timeframe.

4. Name your event.

5. Describe why you’re raising money. Here is some sample language, but please be sure to personalize!

Please help me support TargetCancer Foundation’s work to make a difference in the rare cancer community through a donation to my fundraiser [in honor of [your event/connection to TargetCancer Foundation]. Over the past nine years, TargetCancer Foundation has been at the forefront of driving research in rare cancers such as cholangiocarcinoma and esophageal cancer, and is now also working to empower current patients through a range of patient-focused initiatives. [Add personal note!]

6. Choose a photo. You can use the TargetCancer Foundation logo, or choose a photo of your own.

That’s it! After that you can share your fundraiser, and we’ll be sure to do the same.

A new patient partnered initiative launches.

We are tremendously proud to announce the launch of the Gastroesophageal Cancer Project, a new, innovative patient partnered research initiative.

The Gastroesophageal Cancer Project empowers patients with esophageal, gastric and stomach cancers to directly participate in research by crowdsourcing genomic data, which could otherwise take years and considerable expense to generate, especially in rare cancers. This data is made publicly available for free on the project website, as quickly as possible. This eliminates a major barrier to entry for researchers, providing an immediate spark across the worldwide community to accelerate research into difficult to treat gastroesophageal cancers.

In July 2017, TargetCancer Foundation formally partnered with the Broad Institute of MIT and Harvard on the development of the Gastroesophageal Cancer Project, the newest in a series of similarly designed projects in various cancer types.

As Lead Project Engagement Partner, TargetCancer Foundation created and worked closely with a Project Advisory Council comprised of current patients. This group guided every element of the design of this project from its earliest stages through beta testing, and their critical work continues well beyond the project’s launch. In addition, we coordinated a group of advocacy organization partners who will play an essential role in communicating the project to their respective communities.

After over a year of planning and development, the Gastroesophageal Cancer Project is live and enrolling new patient participants.

How does The Gastroesophageal Cancer Project work? 

 

The Gastroesophageal Cancer Project takes an innovative approach to cancer research by directly partnering researchers with patients facing esophageal, gastric, and stomach cancers. After completing an online survey and consent, patients receive a kit by mail that allows them to provide saliva and blood samples. In addition, the project team contacts the patient’s doctor to obtain tumor tissue samples and medical records. Once all of those materials are received at the Broad Institute, comprehensive genomic analysis is performed on the samples, with the goal of making the generated data publicly available at no cost.

How can I learn more? 

You can visit the website, and also follow the project on Facebook and Twitter to get real time updates on participation and data releases. If you know of someone facing esophageal, gastric or stomach cancer, please let them know about this opportunity to directly contribute to research.

ASCO 2018: An Advocate’s Perspective

By TargetCancer Foundation Advocacy Council Chair Leslie Condon

When I walked into McCormick Place on the first day of this year’s annual ASCO Conference, I was instantly swept into the sea of oncologists, researchers, pharma reps, and others from the medical field who had also descended upon the city for the weekend. Prior to attending the ASCO Conference as a first-time recipient of one of their Patient Advocate Travel Scholarships, I was told how overwhelming the event could be. Thankfully, my extensive prepping (and fascination with the ASCO i-Planner app) allowed me to quickly orient myself within the maelstrom and navigate to my first session, “Talking With Patients About Risk and Uncertainty.” It was one of the many patient-focused sessions being offered at ASCO during the conference, and one of two tracks that I had chosen to follow during my time there. Continue reading

Always remember you should be heard: A journey from caregiver, to patient, to advocate

By Guest Blogger Dana Deighton

Though my 25 years of professional experiences are mostly rooted in marketing, the last 15 years or so of my personal life have been defined in large part by cancer. I’ve experienced many facets: a caregiver, an advocate, and an unsuspecting patient.  Like most people, I learned there is no practice for cancer and there also are no do-overs.  It’s 24/7 on the job training with little time for research and even less for life altering decisions.  That is why I am so compelled to help create new dialogues between medical professionals, researchers, pharma, patients, and caregivers.  One doesn’t know what the other doesn’t share, which is what makes this an evolving opportunity—one that can only result in a win for patient outcomes. Continue reading

Considering Whether Criteria for Clinical Trials Exclude Too Many Patients

Clinical trials are a critical part of the development of new treatments. They rely on people who volunteer to participate and are then closely monitored by medical professionals in order to determine whether an investigational medicine is safe and effective for patients to use. When there is no treatment approved by the Food and Drug Administration (FDA) for a specific disease or when no approved treatments are successful for an individual patient, a clinical trial may offer the best chance of survival. This is especially true in rare cancers, which often have no FDA-approved treatment. Continue reading

Announcing new 2018 grants

As our programs at TargetCancer Foundation continue to expand, we remain committed to our primary mission of funding innovative rare cancer research.

We are excited to announce three new grants totaling over $160,000, supporting projects that accelerate progress towards treatments for those facing rare cancers.

Continue reading

Running Against Cholangiocarcinoma in the 2018 Boston Marathon

By Karen Dempsey, TargetCancer Foundation Advocacy Council Member

Though researchers classify cholangiocarcinoma as a rare cancer, we know the reach of the disease is long. With every patient diagnosed, countless friends, family members, colleagues and classmates are impacted. This year’s TargetCancer Foundation Boston Marathon team is emblematic of that impact. All three team members are running to honor someone lost to cholangiocarcinoma. Continue reading

Right to try, access, and safety.