TCAPP Newsletter

 
 

Reminder: Pediatric Pain Camp Scheduled at Center for Courageous Kids - July 14th- 17th, 2015 

Together with RSDSA & The US Pain Foundation, TCAPP is thrilled to bring you a Pediatric Pain Family Camp at the Center for Courageous Kids from July 14th - 17th, 2015.
The camp will be free to eligible families. Remember that Chronic Pain spans many conditions such as RSD/CRPS, EDS, Marfans, Sticklers Disease, Dysautonomia, Chiari and much more. To find out more about the fabulous folks and Center for Courageous Kids, visit their website at: http://www.thecenterforcourageouskids.org/

To fill out the application, you can apply on-line here under the family retreat section: http://www.thecenterforcourageouskids.org/camperApp.html

Although the camp is free, we at TCAPP realize that many would love to go to camp but may still have trouble making it there. Therefore, we are working hard on getting sponsors and donations to “fund a family” where a travel stipend for an accepted camper may be offered based on financial need. If you know of any corporation, individual, doctor's office, etc. that would be willing to support a family, please email Sue Pinkham at sue@tcapp.org.

Are You a Massachusetts Resident? You Can Make a Difference By Writing Your Legislatures.

We just heard from our friends in the Mitochondrial community, thank you Julie Gortze, that two very important proposed bills are coming up and we have just one week (until January 30th, 2015), to let our representatives now how important these bills are to us. 

The bills are:
HD945: An Act to Create a Massachusetts Rare Disease Advisory Council; and
HD308: An Act Relative to the Care and Treatment of Patients with Mitochondrial Disease

Now is our chance to make that difference instead of just talking about it. You can find your local state representative's information here: https://malegislature.gov/People/Search

Contact your representative via email, phone, or with a personal visit. Most importantly, follow-up. The best way to get through to your representative is to be brief and to the point. Focus briefly in a organized manner on how your rare disease has affected the following for you and your family:

  • Lack of Appropriate Medical Care and Treatment

  • Financial Burden & Inability to Afford Proposed Medical Treatment & Supplies

  • School Issues

  • Disability Management

  • Insurance Issues

  • Work Related Problems

  • Lack of Medical Research and its Impedance to Advancement and Treatment

  • Life-altering Symptoms that Degrade Quality of Life

  • Loss of Loved Ones Due to Disease and Isolation

In Honor of Martin Luther King, and this time of year, let's get those letters, emails and calls made for, "Our lives begin to end the day we become silent about things that matter." Martin Luther King

Other Odds & Ends

We'd like to thank Dr. Pradeep Chopra, patient Karen Richards, and Florian Tschurtschenthaler (brother of Fey Tschurtschenthaler, pain patient) for doing the Polar Plunge 2015 in Newport, RI this year. Over $1,000.00 was raised. Thank you for all that you do!!

Finally, we have listed many new dates for support groups, conferences, etc. on our Facebook page. If you'd like your event posted (support group, conference, etc.), please feel free to email me at aurora@tcapp.org. We are all in this together and support all the non-profit organizations out there that deal with various Chronic Pediatric Pain conditions.