cannabis community care

Cannabis Community Care & Research Network (C3RN) Partners with HNF

by | Oct 11, 2018 | 0 comments

Cannabis Community Care & Research Network (C3RN) is excited to be partnering with the Hereditary Neuropathy Foundation (HNF) to advance Cannabis research, advocate for patients in need, and educate the community!

C3RN’s team is passionate about ending stigma and advancing Cannabis research. The team is made up of Dr’s, Scientists, Growers, Creators, and Doer’s…but most importantly they are medical patients who understand the importance of education and awareness. There are so many ways that this plant can help people with their ailments, but how do we know? Stigma ends where education and awareness begins and whether it is via survey, verbal testimony, or social media…sharing your story is the start. Director of Sales; Andy Westerkamp shares his patient story on their websiteAndy is living with HNPP and manages to improve his quality of life with the help of Cannabis.

Take a look at some of the national statistics from an ongoing IRB approved anonymous patient and consumer survey from C3RN and UMass Dartmouth:

  • 62% of Cannabis users are reducing prescription medication use.
  • 51% report using Cannabis to ease anxiety.
  • 46% use Cannabis to manage chronic pain.

HNF, in partnership with Champlain Valley Dispensary/Ceres, is conducting a medical cannabis survey for CMT/HNPP patients to determine if its use is beneficial. Questions concerning types, amounts, methods of consumption and utilization of prescription drugs will help inform researchers. Please find the survey below. This study is generously supported by Champlain / Ceres.

champlain valley dispensaryceres logo 2

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Did you know that 95% of clinical trials fail? There are multiple causes, most related to efficacy or safety, which obviously can be harmful and risky for patients. The risk-reward of enrolling in trials is a judgment call based on the devastating effects of disease related to quality of life (QoL) or life-threatening disease. With CMT, the risk-reward is more of a challenging question for many, as CMT in most cases is non-fatal.

From the words of a CMT Hero

From the words of a CMT Hero

“FAITH, LOVE AND HOPE KEEPS TIMMY DIXON GOING!”

I often wonder what it’s like to be like everyone else out there. How great it would be to do things most consider easily accessible and within reach. I believe in myself; it’s not really about that. Sometimes I just feel alone, cold, and bitter after considering life in general. Then I ponder a thought: there are too many hurdles I’ve already jumped over

Help us answer questions that your doctors and the CMT Research Community aren’t too sure about.

Did you know that you can become part of a community in therapy development and further research for all forms of CMT and inherited neuropathies? The mission of the Global Registry for Inherited neuropathies (GRIN) is to collect clinical and genetic information from patients with ALL forms of Charcot-Marie-Tooth (CMT) and other related rare and ultra rare inherited neuropathies.

Hot off the press

It seems like almost weekly there is another new publication on CMT with interesting basic biology. While an earlier “Hot off the press” highlighted the work of Cherry and co-workers at the University of Texas Southwestern Medical Center who showed show that neurons lacking a gene for rab7 result in neuropathy.

New Study on CMT Type 2B

If we are to learn more about CMT and the effectiveness of rehabilitation it is worth asking the patient and their caregiver. A recent Italian study by Padua et al recently described a survey of CMT patients and caregivers and their perspectives and perceptions of rehabilitation efficacy and needs.

Allison Moore is going to be published!

HNF’s CSO (Chief Scientific Officer), Sean Ekins wrote a blog about his work with Allison Moore and her two “fighter Mom” friends Lori Sames and Jill Wood. He named his blog: “Rare disease heroes – Extraordinary collaborators we should be listening too.” Sean helped my friends and I write a paper called: “Multifaceted roles of ultra rare and rare disease patients/parents in drug discovery.” YES, Allison Moore is going to be published! It will be in Drug Discovery Today, soon. The link to the reprint is below.

HNF-WVU-NIOSH Study update:

We are pleased to update our readers on the progress of the WVU-NIOSH study, “A Bi-Directional Translational Model of Exercise Training in the Treatment of Charcot-Marie-Tooth Disease”

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