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Top Alzheimer’s Voices for 2014

Here at TrialReach, one of our goals is to honor health advocates and highlight those blogs and websites that are working hard to increase visibility for various health conditions. In May, we selected the Top HIV Voices of 2014, and last month, Top Diabetes Voices.

This month we searched for the best blogs and websites for our Top Alzheimer’s Voices of 2014. Alzheimer’s disease affects an increasing number of people worldwide, with a new diagnosis happening every 67 seconds (in the US alone). There is currently no cure, and an even more worrying fact is that the vast majority of clinical trials fail. As a result, participation in research is critical to finding a cure. The efforts of the following advocates in raising awareness are therefore more important than ever before. Thank you!

“Top Alzheimer’s Voices for 2014”

The following blogs and digital influencers all share the interest in documenting the journey of how Alzheimer’s and Dementia affects those in our communities and offer tips and advice on how the best ways to sustain a good quality of life for patients, families and friends.Alzheimers

Mom, Me and Alzheimer’s Blog – This blog has many different types of posts — the older ones give tips on helping your loved one living with Alzheimer’s and the more current posts share the experiences of the writer’s loss of her loved one.  Very inspirational!
Had A Dad – My author’s  father’s 1253-day journey through Alzheimer’s Disease (AD) and my feelings about it. Now my aunt appears to have dementia, so this is her chronicle as well.

Lewy Body Dementia – Tales from my eventful and ongoing journey as a Generation X caregiver for my father and as an advocate for Lewy Body Dementia caregivers.

Blog by Elder Care at Home – This blog focuses on the needs of older adults, caregivers, and family members living with the diagnosis of Alzheimer’s disease, dementia or other cognitive impairments.

Caregiving, Mothering Mother and More – A blog about the guilt, frustrations, humor and sweet times that come with caregiving with a focus on Parkinson’s and Alzheimer’s.

Living in the Shadow of Alzheimer’s – This blog is about life with my husband who was diagnosed with Alzheimer’s and Frontal Lobe Dementia in 2008.

My Demented Mom – My name is Kathy Ritchie and my mom is demented. She was diagnosed with frontotemporal dementia in 2010. She has lost so many memories, words and all of her freedom. Still she’s a happy, loving human being…………. who doesn’t even know my name.

I am an Alzheimer’s Caregiver – My name is Bob DeMarco, I am an Alzheimer’s Caregiver. My mother Dorothy lived with Alzheimer’s Disease. We lived our lives one day at a time. IAAAC is a companion site of the Alzheimer’s Reading Room.

Dealing with Alzheimer’s Blog –  I was diagnosed with Early On Set Alzheimer’s when I was 46 years old. I am now 54 and working in Advocacy to help fight this disease. I speak on a local and national level about dealing with Alzheimer’s while living it. Hopefully, my perspective can and will help others.

Stranger in Our House – Lori shares her honest journey with her spouse’s condition. Heartfelt.

Dementia Diaries: A Journey with Dementia – I began this blog, shortly after my mom’s diagnosis, as a means of therapy to express how I was feeling and what we were experiencing. Eventually, I opened it up to close friends and family members.

Alzheimer’s Speaks – Alzheimer’s Speaks was created.  To bring voice back to the disease in many formats and fashions: while encouraging, assisting, and engaging those in need.

Early Onset – Early onset dementia before age 65. Live life to the fullest and find humor in everyday life.

The Alzheimer’s Spouse – a website I started in July 07, when the shock of what Alzheimer’s Disease was doing to a decades long loving marriage had me in emotional turmoil.

Parkblog-Sliverfox – This blog documents how Lewy Body Dementia has changed my life. It is a continuation of the previous title; “Sharing my life with Parkinson’s and Dementia” because the diagnosis has become more firm.

Surviving Alzheimer’s - Blog run by Paula Spencer Scott, the author of ‘Surviving Alzheimer’s’. It covers some practical time and provides ‘soul-saving’ wisdom for caregivers.

Steps & Stages - An excellent resource for family caregivers run by one of our partners – Caring.com

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Peter: On Waiting and Faith

The Reverend Peter K. is the vicar of my local church. Like so many people in the village, I have been following his battle with cancer for many years. Last year his condition deteriorated significantly and we all waited anxiously to find out if he was going to be able to take part in a promising clinical trial. This is his story….

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As Hillary Clinton famously quoted, “It takes a village.” When Peter K., the vicar of a small village in Worcester, was diagnosed with Chronic Lymphocytic Leukemia (CLL), the whole community rallied. “I never needed a ride to the hospital,” says Peter. “There’s a mission to keep me alive.”

When first diagnosed with CLL, Peter’s eight year-old daughter found him reading a book about cancer in a bookshop. “You don’t have cancer do you?” she asked.  At the time Peter thought he only had months to live, “this was it.” Today, his daughter is 26 and his blood levels are back to normal. The journey, however, has not been plain sailing, to say the least.

Peter is alive today because of the development of new medical treatments. For eighteen years he has been trying experimental drugs and recently developed treatments. “Many times I came to the end of the path when the treatment was no longer working but I stuck in there, hoping there would be another new one.”

Last year Peter had reached, what appeared to be, another dead end. His symptoms were getting worse, “I was living on blood transfusions. You’re aware of the fact that you are living on borrowed time.” But Peter was lucky. He had a consultant who was passionate about medical research and she recommended that Peter apply for a clinical trial of a new CLL treatment.

The process of applying for the trial was nerve-wracking because Peter didn’t have a high enough platelet level to be eligible for the trial. His doctor wasn’t giving up though. She kept giving him more transfusions until his platelet level reached the required 50.  When the nurse phoned Peter with the results, she got quite emotional. “We’re there. We did it!” she told him. Peter says the nurses make you feel like you matter.

The process of participating in the trial made him very weary. “There was so much waiting, lots of sitting around and the knowledge that many of the people participating in the trial just disappear. Mortality is what you’re thinking about. I felt it more strongly this time.”

Peter does not mind being thought of as a patient. “The definition of patient, one who suffers, one who waits is accurate. I think it’s quite a noble word”.

Thankfully, the new treatment appears to have worked as his blood levels are back to normal and the trial team is pleased with his response.  The word ‘cure’ is even being used as a possibility. “It’s taking me a long time to come to terms with the fact that this may be a cure.”

Peter retired as the vicar of eight other parishes in December. He performed one of his last services on Christmas Eve. It’s going to be a difficult transition for him. “You get hooked on people,” he says: “It’s like a drug.  After 40 years I’ll have to go searching for something else to give my life meaning. However, I feel extremely privileged to live in this community – there’s a sense of self as community.”

Peter also feels guilty that he is still alive, when others, including people he has known, are not so lucky.  “I do feel guilty. I’m still here, other patients haven’t got on the trial or even heard about it.  But I also feel very fortunate.”

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2014 Top Diabetes Health Voices and Blogs

At TrialReach, we believe that patient advocates are vitally important to the overall continuity of healthcare at a fundamental level. Last month we celebrated HIV activists and HIV bloggers by launching TrialReach’s “Top HIV Voices for 2014.” The response from these health advocates was amazing and humbling.  We also asked our own social media community to share with us the names of other blogs and communities deserving of the “#TopVoices” recognition by TrialReach.  Today, we continue that mission announcing our celebration of Type 1 and Type 2 Diabetes bloggers and online communities.

TrialReach.com’s “Top Diabetes Voices for 2014”

We asked one of our favourite voices in the diabetes community, Alexis Pollak from I Run on Insulin, to assist us in selecting an amazing mix of top voices. We chose Alexis for many reasons, but this statement on her blog sums it up pretty nicely: “Diabetes advocacy and supporting people with diabetes is my passion.”  Although she wasn’t promised anything for her assistance, she certainly embodies the type of advocates that we are highlighting. So thank you Alexis, and congratulations on making the list yourself!

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The following blogs and digital influencers all share the commitment and focus to live a full and rewarding life with diabetes, while contributing to the much larger global diabetes online community.

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  1. I Run on Insulin – Combining her passion and her career working for a diabetes device company, Alexis has created a very strong network around her, influencing others as a top voice for type 1 diabetes. “I hope this blog allows other people with diabetes and those that care about someone with diabetes to connect, to offer hope, to commiserate, to laugh, and to know that there are other people who get it.”
  2. Rolling in the D – Scott is ‘just a family man with Type 1 diabetes’ but you will quickly realize that this blog is full of personality and humor.  For proof, check out his popular “You Might Be A DOCaholic” blog.
  3. Sweet Success: Life with Diabetes – Kate is a PWD, Type 2.  “Does that define me? Yes and no. I’m so much more, but my blog is about life with diabetes.”
  4. Snack on a Bike – Florian is a German Type 1 diabetic trying to cycle more by offering tips for other cyclists.  This simply designed, but effective platform is rich with images making riding with him on his journey beautiful.
  5. The Butter Compartment – Lee Ann is an active Type 1 diabetes blogger and art therapist using her blog to share insightful posts about the mental health issues associated with diabetes.  What about the name of the blog?  It’s actually where she stores her insulin!
  6. Cranky Pancreas – Bea is a Colombian living in the greater Chicago area. She was diagnosed with type 2 diabetes in April 2001. She also writes for the Type 2 Experience.
  7. Despite My Pancreas - Jennifer was diagnosed with Type 1 diabetes at the age of 7.  This blog shares her adventures in running, cooking and eating with diabetes with honesty and personality.
  8. T minus 2 - Bob shares, among many other topics, his experience living with type 2 diabetes. Check out his popular, award-winning post “The Basis of Self-Esteem.”
  9. Six Until Me – Living with Type 1 diabetes, Kerri is also an author and blogger.  Simply stated, she shares “diabetes doesn’t define me, but it helps explain me.”
  10. Scott’s Diabetes – Diagnosed with type 1 diabetes, Scott shares that he recognizes “the incredible mental struggle of living with diabetes.”  He also co-hosts internet radio broadcast DSMA Live!
  11. Diabetes Ramblings – Sue is a mother of five, wife of one, and a type 2 diabetic blogger. One of her latest blog posts shares what mobile apps she uses to help manage her condition.  And Sue, we love the name change! Congratulations!
  12. Diabetes Mine – “This site was created by patients for patients as a ‘diabetes newspaper with a personal twist.’” Founder and editor, Amy was diagnosed with type 1 diabetes in May 2003 and uses her experience in digital media and journalism to lead this fantastic and deeply insightful, innovative advocacy platform.
  13. D-Mom Blog – Leighann shares her experience of being a mother of a child living with type 1 diabetes (thus, the “d-mom” title) with other parents offering tips and a very deep resource and insight.  She also penned a book: Kids First, Diabetes Second.
  14. My Diabetic Heart – Mike shares his journey living with type 2 diabetes and Congestive Heart Failure. Through his honest blog he reminds us, “the important thing to remember is that no two people experience type 2 diabetes in the same way and, as such, what works for me may not work for you.”
  15. Diabetes Dad – Tom has been known as “Diabetes Dad” for years, even signing all of his blog posts with “I am a diabetes dad.” One recent post acknowledges his social reach– saying he received not hundreds, but “thousands” of messages of support after he shared that he wasn’t having the best day.  His reaction: “Just wow!”
  16. The Angry Type 2 Diabetic – Lizmari is a type 2 diabetes blogger and although her blog name may lend itself to a bit of dismal impression, she promises “I’m not really THAT angry; just some of the time.”  We do love The Moldy Cupcake Award given to those that perpetuate misinformation in the diabetes health community.
  17. This is Caleb - Lorraine shares her stories and the journey of her son, Caleb, who lives with type 1 diabetes.  She started this resourceful blog for parents of those newly diagnosed and she “happy to reach out to them, to provide support and share our experiences.”
  18. Diabetes Sisters – Through their sisterTALK section, Diabetes Sisters host an “outstanding network of women who share their thoughts and feelings about the nuances of living with diabetes in weekly blogs.” Be sure to check out their type 2 diabetes section.
  19. Curemoll - This blog is a “‘life of a diabetic’ and personal/music blog of Mollie Singer and twin sister and Diabetic Angel, Jackie. Normally, Mollie writes about her daily life as a diabetic, how-to tutorials about diabetes, insulin pumps, sensors, etc, and music related blog posts.’”  Mollie was diagnosed with type 1 diabetes when she was 4.
  20. College Diabetes Network – As a resource for college students living with type 1 diabetes, “CDN’s mission is to empower and improve the lives of students… through peer support and access to information and resources.”
  21. Diagnosed Not Defeated – By bringing the African American perspective to the diabetes online conversation, Dr. P’s blog is a great resource for those living with type 2 diabetes. She also is the founder of Black Diabetic Info.
  22. Shell’s Journey – Living with type 2 diabetes, this Australian mum of two wants to “give others hope that it can be controlled and it isn’t a “life Sentence” if you do the right thing.” Her latest blog post is honest and you should read it: Life Can Give You Many Up’s and Down’s.
  23. The Dirty Diabetic – This cleverly funny and poking type 2 diabetes blog recognizes that we aren’t all perfect.  So much so that the author of this blog shares “pictures of all the things we can’t have anymore and a confessions page about cheating on your diabetic diet.”
  24. My Diabetes and Me – Shannon, a type 2 diabetic from Tennessee has the camo and feisty Southern personality that we would expect.  The great surprise is her blunt, realistic view of her journey living with diabetes and she proudly shares her weightloss success as the header.  Great job, Shannon!
  25. Diabetes CGM Blog – Dave, a type 2 diabetic and guru for CGM-Continuous Glucose Monitors, shares his thoughts and experiences on his journey living with diabetes.  Want to nerd out on all the gadgets, be sure to visit this blog.
  26. Rich the Diabetic – Rich lives with type 1 diabetes and is very active in the diabetes community online.  His blog also includes one unique page that helps navigate the sometimes confusing array of Twitter hashtags [ #dblog for example ].

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TOP HIV Voices 2014

Today we are launching the first in a series of ‘#TopVoices’ to honour the best bloggers and online resources for patients. Part of our mission is to provide support and help to patients when they are making critical decisions about their health. The people and sites we will be awarding our ‘Top Voices’ badge provide immense value; from providing practical advice to connecting patients with others who are going through the same journey.

Our ‘#TopVoices’ awards was inspired, in part, by one of our very favourite bloggers, HIV activist Josh Robbins who founded I’m Still Josh. Josh has been helping us to choose the award nominees, starting this month with the HIV community.

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TOP HIV Voices 2014 badge

We hope you find this useful and please let us know if there are any blogs or sites that you would like to nominate for a ‘#TopVoices’ award.

Over to Josh:

These “Top HIV Voices for 2014″ embody the passion that it requires to build a community from a fundamentally limited beginning— sharing a personal story or contributing in a small but grand way to the global conversation surrounding the HIV community, HIV activism and the reduction of new HIV infections; advocating for increased awareness, decreased stigma, and the chance eventually to an AIDS-free generation.  

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Josh Robbins, the founder of I’m Still Josh

As an HIV blogger myself and founder of “I’m Still Josh”, the blogs and digital HIV destinations below continue to inspire me, challenge me, encourage me and offer wisdom that words alone could never explain. In addition to this very short list, there are many more blogs and publications that inspire me and that I find great comfort.  


Congratulations to the following TrialReach.com’s 2014 Top HIV Voices:

Rise Up to HIV - Founded by Kevin Maloney

Volttage Buzz - Founded by Jack Mackenroth

Poz Life of Patrick - Founded by Patrick Ingram

My Fabulous Disease - Founded by Mark S. King

Shawn & Gwenn - Founded by Shawn Decker & Gwenn Barringer

A Marine and HIV - Founded by Brian Ledford

OpenlyPOZFounded by Rob Quinn

POWER - Founded by Nelson Vergel

HIV Blogger: Living Positively - Founded by Michael Carchrie Campbell

HIV/AIDS Activism & Advocacy Report - Founded by Aaron Laxton

The STD Project - Founded by Janelle Marie

UK Positive Lad - Founded by Tom Hayes

Justin’s HIV Journal - Justin B. Terry-Smith

My Journey With AIDS - Founded by Kenn Chaplin

The Naked Truth: Young, Beautiful and (HIV) Positive - Founded by Marvelyn Brown

Christopher vs HIV - Founded by Christopher Myron

My PrEP Experience - Founded by AIDS Foundation of Chicago

My Coming Out… Take Two - Founded by Frankie Frank

Dave’s Life Living With HIV - Founded by Dave Jones

Diva Living With AIDS - Founded by Rae Lewis Thornton

Sean Strub - Founded by Sean Strub

And of course, feel free to visit my HIV blog — I’m Still Josh – Founded by Josh Robbins.


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Simon Denegri: On Working Together

I don’t think there’s anyone in the UK  more passionate about patient participation in clinical research than Simon Denegri, the Chair of Involve and the NIHR National Director for Public Participation. I  recently had the pleasure of sitting down and talking with Simon about his plans for next year, which include an update of the UK Clinical Trials Gateway and a big patient outreach campaign, ‘Ok to Ask‘.

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As Simon points out, under the NHS Constitution patients have a right to be informed of research studies in which they may be eligible to participate.

An important part of making this right a reality is bringing patients, researchers, the public sector and the private sector together to collaborate. As part of World Poetry Day,  Simon wrote a poem about the experience of a patient participating in clinical research and the power of working together. We have reproduced it here with his kind permission.

If we work together

We can do it better
This thing called research.

This endeavour.

So here I am
Neither subject nor guinea pig
With no letters after my name.

But I know a thing or two.
About what it’s like.
About what it’s really like.

And all I ask
Is that you let me ask
Why, when, who and what for?

I’ll work with you on a cure
Although I’ll be long dead by then I’m sure

(But who knows we might get lucky).

If you’ll also help me with the pain
And making the day
Worth waking for.

For when dusk does night betray
I want to be able to say
I made a difference for me, for you, for us.

Now that we are working together
Wouldn’t you say
it’s better?

This thing called life.


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Patient.co.uk and TrialReach: Giving patients greater access to clinical trials

We believe it is every patient’s right to know about the clinical trials that may be their only hope for better quality of life or their last chance to extend their life.

An important way for us to reach more patients with this vital information about clinical trials is through our partnerships with major health websites such as Patient.co.uk, the UK’s leading independent health information website. Together we have launched an new easy- to-use tool that empowers anyone searching for information on Patient.co.uk to find and directly apply to participate in clinical trials.

Check it out and let us know what you think. We’d love to hear from you.

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