Free Money!

Well almost free! ;-)

 

Our lovely Margo has been contacted about a market research study for diagnosed epileptics and their caregivers.  This will be a phone conversation and can earn you up to $75 dollars for your time! 

Adept Consumer Testing, a National Market Research Firm, is looking for
Caregivers of individuals and Patients who have been diagnosed with EPILEPSY
 to participate in a paid market research study.
 
These web-assisted telephone interviews will last approximately 60 minutes, between Wednesday, October 9^th and Friday, October 18^th.
A generous honorarium will be provided to all those that qualify and participate.
 
If you or someone you know is interested, please call us so we can ask the remaining qualifying questions.
We thank you for your interest!
 

We are offering a donation/referral fee of $75 for each participant that qualifies and completes the interview.

 

If you have any questions or know someone who might be interested please feel free to contact us.
 
 
Please call Susan @ 800-233-7895 extension 364

All information will be kept confidential and will not be used or sold for any other purpose. Adept will always abide by HIPAA laws and will never share personal identifiable information

Also if you have the some free time there is a study that the University of Utah is doing to help with the burgeoning need to supply healthcare in a growing city along with the changes healthcare is experiencing-

There are currently several major transitions taking place in the health care delivery system at a local, national and global level.  While much of the work in past years has focused on the mechanisms for delivery from a system perspective, more emphasis is currently being placed on insuring that community members who are being serviced by these delivery systems are involved in contributing to the optimizing of care delivery.  This project is designed to solicit feedback from community members regarding their definitions of health, healthcare, health care transformation, and personalized healthcare, and to identify mechanisms that will allow ongoing community engagement.  The primary means of obtaining this feedback is through semi-structured interviews that will use a focus group approach.  This will be conducted in the Salt Lake metropolitan area. Common themes will be identified after focus group interviews to categorize community perceptions of healthcare transformation and personalized health care.  

Purpose:  The purpose of this project is to solicit feedback from community members regarding their personal needs for healthcare services and the process of healthcare system transformation in the Salt Lake metropolitan area.  Specifically, we plan to provide a forum where community members can inform the sponsoring entities as described below:

1.     For the Program in Healthcare Transformation (PHT) - we wish to understand public perceptions and interests in what should be included in a transformed healthcare and health system.
2.     For the University of Utah Hospitals and Clinics (UUHC) - we wish to understand how community members think about: (1) their health, healthcare and the health system; and (2) UUHC’s mission of scholarship, impact on the community, and collective role in transforming the health care system.
3.     For the Center for Clinical and Translational Science (CCTS) - we wish to optimize the link between the academic community and the community at large.
4.     For community members - we wish to provide an opportunity to provide the community perspectives relative to: (1) their goals for their own health and the health of their families and associates; and (2) how the health system can support them in this process.

 

Mechanisms by which the “community voice” can be included in this emerging process will also be explored.

 

Sponsors:  This project is being sponsored by the University of Utah Program in Healthcare Transformation, Utah Personalized Healthcare Consortium and the Community Outreach and Collaboration Core of the Center for Clinical and Translational Sciences.

 

We will recruit approximately 80 individuals to participate in eight focus groups.  The focus groups will include patients that meet the following criteria:

 

The following constituent groups will be recruited for participation (approximately 10 participants per group).  Focus group members will be invited to participate according to the criteria described below.  They will also be invited to represent both, their personal experiences and views as well as those from their “community” (i.e., others who would meet the specific focus group criterion).

  

 

I still have room in the yellow groups

 

1.     General adult (age 21 and older) patients of the University of Utah Community Clinic System OCTOBER 2 AT SUGARHOUSE CLINIC 1138 E WILMINTON AVE 5:30 PM

 

2.    People who are in their reproductive years (ages 21 through 35) NOVEMBER 4 UNIVERSITY OF UTAH HOSPITAL 5:30 PM

 

3.  Seniors (ages 65 and older) SEPTEMBER 30 @ SUGARHOUSE CLINIC 1138 E WILMINTON AVE 5:30 PM

 

4.   Adult patients (age 21 and older) who have chronic diseases, such as high blood pressure and diabetes mellitus OCTOBER 9 AT REDWOOD CLINIC 1525 W 2100 S SLC, 5:30 PM

 

1.        Adults (age 21 and older) from community at large who are facing health disparities, including limited access to healthcare service

 

6.   Insured (University of Utah Health Plan and Healthy U) adults (age 21 and older) who have not had documented use of the healthcare system for at least 1 year

 

7.   Adults (age 21 and older) enrollees of the University of Utah Health Plan who utilize the wellness programming but do not have other documented utilization of the health system for at least one year

 

           8.     Adult (age 21 and older) patients who have Spanish as their only or primary language

 

 

Please contact CONI 801-585-5255 TO REGISTER, SPACE IS LIMITED.

 

These are great ways to get your opinion out there as no health facility or company can properly meet your needs without knowing what they are! 

 

Until next time- Trina

Seize the Night A Success!

We at the Epilepsy Alliance of Utah would like to thank all those who attended the Seize the Night event on Saturday!  It was a great success and so much fun!  A huge thanks to Margo and the Board who made this event possible!  

Straight to the Hill!

Attention friends of Epilepsy Alliance of Utah

Medical research is vital in our efforts to find new and better treatment for the sufferers of epilepsy related consequences.  As most of you know these can be damaging to families and the ability to live a normal life.  So while Congress debates where money should be spent we need you to raise your voice and demand that one area of the budget that cannot stand the cuts is medical research.  If you would contact your representatives in the Congress and Senate before or on the 18th of September and inform them of the importance epilepsy plays in your life and how medical research into the cause and treatment are vital to your well being we would ever so much appreciate it!  After all we have gotten this far as a group so we need to unite to get event farther!

Rally for Medical Research Hill Day

September 18, 2013

Federal funding for medical research is in jeopardy, threatening the health of Americans. On September 18, 2013, a broad coalition of groups from the medical research advocacy community will meet with House and Senate offices in Washington, D.C., to urge Congress to invest in the National Institutes of Health for the health and economic security of our nation.Sponsoring organizations will join the Rally for Medical Research Hill Day to raise awareness during a critical time about the urgent need for a sustained investment in the NIH to improve health, spur more progress, inspire more hope and save more lives.

The Epilepsy Foundation is joining in the "Rally for Medical Research" Hill Day on September 18th.  We encourage you to join us on September 18th by contacting your Senators and Representative. Please join the Epilepsy Foundation in calling for increased medical research funding by tweeting your Representatives using the hashtag #RallyMedRes, or reaching out to them on Facebook on September 18^th.

Weed for All?

As I pondered what would be my first big post on the blog one interesting story that was recently in the news kept hounding me.  As Epilepsy Alliance of Utah takes no position on the use of medical marijuana at this time its interesting to note that in Pleasant Grove, Utah the mother of an boy who happens to have intractable epilepsy is trying to gain support for the use of medical marijuana.  She explains that only two forms of treatment have worked for her son in the past; pharmaceuticals and marijuana.  Everyone with epilepsy knows that while pharmaceuticals can give you your life back from the constant worry of when a seizure will strike and the days of work to rebuild what you lost; they come with bad side effects that can ravage your body and sadly the good doesn't last as long as the bad.  So alternatively the medical community has answered this call with the vagal nerve stimulator and biofeedback but for those who are intractable these interventions don't help.  The inability to find a consistent treatment for her sons epilepsy is what led this Pleasant Grove mother to marijuana and she is happily surprised.  
What might surprise you more is that this treatment is not new.  I as a medical professional working in epilepsy for the past two years have known a few patients that report cannabis as their cure all.  The science seems to be behind this also as Dr. Sanjay Gupta explained on CNN a few weeks ago.  Marijuana relaxes the central nervous system and if, as believed, stress causes most seizures then cannabis is the answer.  And so this Mormon mother is asking for support in her cause to ask the Utah state legislature to approve the use of medical marijuana.
I would like to pose this to those of you with epilepsy and family... 
Have you used marijuana as a treatment for seizures and would you support a bill in the Utah state legislature to legalize medical marijuana?