Monthly Archives: October 2013

Pheo Para Troopers’ New Website!

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The Pheo Para Troopers are committed to bringing patients from the global community together to share information, learn from each other, advocate for our disease and pass on relevant news and upcoming events.

We hope you’ll find this site helpful for learning about pheo para and staying connected with the pheo para community. Please take the time to mark your location on our patient map and if you have any comments or suggestions for us please visit us on Facebook or send us a message at info@pheoparatroopers.org. We’re always available to listen and learn from the community. Together we can change the course of pheo para’s history. Together we can make a difference.

Inaugural PheoPara 5k A Huge Success!

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At 10 a.m. on September 21, 2013, Anne Licker’s dream of hosting a 5K run/walk to benefit pheo/para came true. Almost 200 people, ranging in age from 8-80 years old, signed up to race in Orchard Park, N.Y. Anne’s nephew Drew (SDHB+) was the youngest runner and her mom (SDHB+) was the oldest. “My mom beat many people half her age. She is such an inspiration!” Anne said.

However, the real inspiration is Anne. She began planning a similar event in 2012 and ran into some roadblocks. One was getting insurance for the event. She ultimately had to surrender the 2012 race idea, but she never gave up. Anne has always been a leader in the fight against pheo/para, and her goal has always been to spread awareness. When asked what gave her inspiration, she said, “The loss of my brother and seeing two of my sons deal with this disease. I know when any of us visit a doctor — it’s a repeatable story with pheo/para patients — the doctors (are uninformed) and some doctors may take on a patient and guess their way through treatment.” Anne has 15 family members with the SDHB mutation and has many friends in the pheo community. She doesn’t want to lose another one of them to this disease.

To realize her dream, Anne started participating in other 5K events and observing what was involved in making them successful. During one of these events, she met a group called Eclipse Multi Sport, and a meeting was set up for a few weeks later with Anne and her sister-in-law, Meghan. The inaugural Pheo Para 5K was born.

Eclipse Multi Sport took care of everything race related: course layout, insurance, registration, permits, etc. This allowed Anne and her team to focus on the rest of the event: donations, sponsors, after party, etc. The result was a phenomenal event!

On September 21, the day before Anne’s brother would have turned 60 (he died at age 32), pheo/para patients, friends, and supporters ran a course around Ralph Wilson Stadium, home of the Buffalo Bills, in the pouring rain. “I can only say it was AWESOME!” Anne declared. The event collected over $10,000! “Although it rained and our numbers were below what we had hoped for, it was such a fun family event. Everyone was talking about the fun they had and cannot wait until next year!”

Congratulations to Anne and the Licker family for hosting such a successful event!!! Anyone looking to host a similar fundraising event in their hometown can contact us at info@pheoparatrooper.org for more information on how to get started.

Making A Difference One Email At A Time

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Last month, with the help of many pheo/para patients, friends, and family members, we started a letter writing campaign asking that more funding be put into pheo/para research. We requested volunteers to take a few minutes to send emails to the following: Dr. Francis Collins (Director of NIH); Kathleen Sebelius (Secretary of Health and Human Services); their senators and congressmen / women; and the President.  Great news, Pheo/ Para Advocates!! Many of the volunteers who wrote to Congress, the White House, and the NIH have started
getting letters back! We’re being heard, and we’re making some waves. Let’s keep the momentum going by continuing to write in and following up on letters that have been answered.

The original letter writing campaign link is below, which includes all the email addresses you’ll need as well as a letter template if you don’t want to create your own. Joining the letter writing campaign is easy. It will only take a few minutes of your time, it won’t cost anything, and it could put us one step closer to finding a cure.

“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.”  Margaret Mead Letter campaign link with template included. In 2011 The Troopers embarked on a monumental task and after almost 3 years of hard work, it is close to fruition.

The World Wide Patient Database is set to launch at the beginning of 2014. This database will be an important research tool for pheochromocytoma and paraganglioma. We as a patient group recognize that there is a need to study larger sample populations than is currently possible because of small patient populations in each country or geographic location. This is often a problem with rare disease. As a result this World Wide Patient Database with be a physician entered tool that will be capable of facilitating research around the globe.

We believe this patient owed and operated world wide database is the key to centralizing large volumes of patient data for all major researchers to access.

Let’s Help Find a Cure

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Let’s help find a cure!

Ongoing research in pheo/para can’t continue without our help. Whether you’re a patient at NIH, the Mayo clinic, UPenn, Duke, or some other smaller medical center, if pheo/para research is being done chances are the funding is through a grant from the NIH.

We’re unique because we’re unique. Unlike other, more common diseases and cancers, large drug companies have no vested interest in finding a cure for pheo/para because there is no monetary incentive for them to do so. Pheo/para researchers are dependent on “orphan drug” programs and government funding. Your help is needed to ensure that these programs continue to be funded.

It will only take a few minutes of your time and it won’t cost you a cent but it could make a world of difference to pheochromocytoma and paraganglioma research. Please take the time to write to the director of NIH (Dr Francis Collins), Kathleen Sebelius (the Secretary of Health and Human Services), your senator, congressman/woman and to the president. Yes, the president of the United States! The squeaky wheel gets the oil folks so the more letters they get the better. Have your friends, family, FB friends, everyone you can think of write in too. Let’s be heard!

How to write to the president… The easiest and fastest way is to contact the president is to send him an email at www.whitehouse.gov/contact/submit-questions-and-comments

How to write to your senator… The easiest and fastest way to contact your senator is also via email.
Reference Home > How to… > contact US Senators – U.S. Senate
How to write to Dr Collins (the director of NIH)…
email him at francis.collins@nih.gov, and copy his assistant at GottesmM@mail.nih.gov as well as guttmach@mail.nih.gov
How to write to the Secretary of the Health and Human Services (Kathleen Sebelius)…
email her at Kathleen.Sebelius@hhs.gov
What to say…. Be concise, polite and professional (in less than 2500 words).
I have composed a letter template that you are free to use as your own, just change the specifics to be gender appropriate and to reflect your situation instead of mine. Add your name and any other personal information you think might help our case and hit the send button.
We can do this pheo/para friends! Let’s help find a cure!!!
Letter template…
https://docs.google.com/document/d/11breWeekyr5841JAzCfHAazlSpfA8kejgU8U2pwYmG8/pub