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On International Clinical Trials Day, a look at where we’ve been – and where we need to go

Two hundred sixty-eight years ago, the sailors aboard the HMS Salisbury were facing a very real fear: scurvy, a disease that had claimed the lives of more than a million sailors, had appeared on their ship. It was thought that perhaps drinking orange and lemon juice might prevent the disease, but no one knew for sure how to stop the life-threatening illness.

patient-globe@2xEnter James Lind, a surgeon in Britain’s Royal Navy who is known today as the first to run a clinical trial. Lind, “acting on a hunch that scurvy was caused by putrefaction of the body that could be cured through the introduction of acids,” recruited twelve sailors to participate in what is widely believed to be the first “like versus like” comparison test of treatment options. Lind gave two men each a different treatment regimen every day for two weeks, and in the end, those given citrus fruits had the best response. The key to curing scurvy was discovered – and the clinical trial as we know it was born.

Centuries later, we’ve come a long way. Today, the US government website clinicaltrials.gov lists 35,373 clinical trials actively recruiting patients. In the years since Lind’s time, clinical trial protocol and drug approval practices have become heavily regulated, and hundreds of thousands of clinical trials have yielded some 1,505 FDA drug approvals to date. These drugs provide relief from symptoms and – in some cases – save lives.

picToday, we are celebrating International Clinical Trials Day. If you are a patient who has participated in a trial, or a researcher who has conducted one, thank you. Your involvement in clinical trials is crucial to providing hope for the future of medicine.

But, we know that there is still work to be done. Just 3% of American cancer patients participate in clinical trials, and only 15% are even aware that clinical trials are an option. This may be one reason that up to 40% of oncology trial sites fail to enroll the minimum number of patients needed to conduct the trial. Time is wasted, money is wasted, and patients continue to suffer through illnesses without knowing all of their options.

We can do better. James Lind got the ball rolling. Let’s keep it going.

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The Lilly Clinical Open Innovation API and TrialReach: A Story of Innovation

This blog post was written by Tom Krohn, Chief Development Officer at TrialReach

Everyone has a story.  You.  Me.  Innovation.

About four years ago, a small group of Lilly employees started work on open innovation with a focus on improving public information to accelerate medical innovation. Barry Crist and I wrote a whitepaper that outlined a vision for clinical knowledge generation becoming participatory for all in the clinical research ecosystem, especially patients.  Participatory—that is the essence of an open network. It is at the core of open innovation.

With executive sponsorship and a case for action, we took these ideas and developed an open API, which launched in 2012. We put Creative Commons copyleft licensing on the API to remove the friction that is the norm of the life science industry. Then, open innovation happened.

People started using the API. Patient organizations. Data service providers. Even our competitors. We ran an in-house hackathon that generated some cool apps, a codeathon with central Indiana talent, and a Clinical Trial Redesign challenge. We learned and evolved with the emerging marketplace. But the data was insufficient. While the API made things easier, an API is only as good as its content.

We shifted our focus and did the hard thing: listening to patients and those serving patients. We challenged all of Lilly to listen and engage patients differently: in trial design processes, in trial execution, and through post-study results sharing and continuity of care. Our Patients at the Center of Clinical Trials Workshop was a powerful onsite gathering of open sharing and creative solutions with patients and disease advocacy leaders (the first of its kind for Lilly, and perhaps all of pharma). One of the areas in which patients spoke very loudly was helping patients find, understand, and match to clinical trials. Clinicaltrials.gov receives 112 million page views per month. A good portion of those views come from patients and their caregivers, yet it is far from meeting patients’ needs.

This was a challenge we had to take on.

Patients 2 Trials

We in the pharma industry are our worst enemies, because we make it difficult for patients to connect to our studies. Information is hard to find, is written from a scientific-only point-of-view, and is often only available at the investigator site where distance and logistics can be a big barrier to patients.  We also focus on our single study while from a patient point-of-view, the perspective is “which clinical trial might help me?” regardless of the sponsor. With this background and understanding, we moved this initiative beyond Lilly to a small consortium of the willing. This was the birth of the Patients 2 Trials Consortium.

Using our API as a base platform for augmented content, we took on the task of structuring eligibility criteria in a consistent and machine readable manner. Pfizer and Novartis, through their innovation teams, recognized the potential and joined us. Soon we were structuring trials from each of the consortium’s partners. At the same time, the U.S. government had put the Blue Button initiative into play with Meaningful Use stages and incentives, and we now had a patient record format against which to test our approach. We successfully tested it and shared the outcome at the 2014 Partnerships in Clinical Trials conference.  The Patients 2 Trials consortium then moved on to market pilots and finding a long-term home for the API and the trial matching approach. The primary goal of finding a long-term home was to maximize impact for patients, drive to sustainable scale, and ultimately to help transform the industry.

TrialReach

Lilly chose TrialReach to be the long-term home for its API platform and trial matching work, and completed the agreement late last year.  TrialReach’s strong patient focus, large network of partners and freemium business model made it a great home for the initiative. Lilly and TrialReach completed the technical transfer of the API in the first quarter of this year. And, at the 2015 Partnerships in Clinical Trials, representatives from Lilly, Pfizer and Novartis announced the transfer of leadership to TrialReach.

So what is next?  First of all, three of the Lilly COI team members (Tyler Trueg, Dean Sellis and me) have chosen to join TrialReach to see this innovation through to full success. It was a tough decision for each of us. We truly enjoyed the innovation work at Lilly and the collegial environment that allowed us to make a difference. We are excited to bring our knowledge and experience in clinical trials and the API platform and combine them with the patient-engagement insights of the TrialReach team to help this become an industry game changer.

TrialReach is committed to structuring ALL recruiting clinical trials and making this information ubiquitous on the internet.  We’ve started with diabetes studies and have a plan in place to roll out additional therapeutic areas. Our goal is to complete all therapeutic areas in one year.  It is a big goal, but also one for which patients are waiting.

We are also committed to partnering with sponsors in bringing easier-to-understand study information to the internet.  As I’ve shared before, we need to separate informed from consent.  Patients need to be informed to consent, but don’t need to consent (at site) to be informed. Instead, patients need and deserve clear information so they can compare studies, determine which ones they may be eligible for, and deeply understand the implications of participation in a study—all before they have to make the journey to the nearest investigator site for the full screening and participation.

Time for Change

The time for this change is now. The industry needs to look at its trial accrual challenge through new lenses.  Patients have wanted this improvement for a long time. And, it is personal to us and to me. About two years ago, I lost my brother-in-law to esophageal cancer. Unfortunately, by the time a clinical trial was considered, it was too late. As my sister-in-law said, “I believe most patients who want to fight their cancer will be very interested in clinical trials if they could find them and understand them and didn’t have to depend solely on our doctor.” This is exactly what we are trying to do.

And so the story continues, both my story and this innovation story.  I’m not sure how the story ends— we never quite know. But we’ve made it this far through perseverance and commitment. I know we’ll be faithful to patients and the vision to serve them well.  And in the process, write another chapter in the innovation book and changing the life science industry.

About the Author

Tom Krohn is the Chief Development Officer for TrialReach and is responsible for business development, including clinical trial sponsor tomrelationships, patient advocacy groups, and research institutions. He has 25 years of experience across different sectors in health including large pharma, hospital & retail pharmacy, and the developing world. Most recently, Tom led the Clinical Open Innovation team at Eli Lilly with a focus on patient engagement, open data, and business transformation. Tom is passionate about serving patients from their point-of-view while building sustainable and highly effective organizations.

This blog post originally appeared here. It’s been reprinted with permission.


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Are you eligible? #BreastCancer Trial Needs #MBC Patients. Written by AnnMarie Ciccarella

There is a breast cancer trial that is recruiting right now for a new targeted therapy. You may be eligible to participate or you may know someone who is eligible. We all benefit from this so I’m asking this be shared in as many places as possible, especially in groups where there is a large population of people with advanced or metastatic breast cancer.

Afraid of participating in a clinical trial. Worried about that lab rat thing? Please click over to this post for a basic rundown. I’ll just say this. When anything other than cells in a dish are involved, protection of humans and animals is taken quite seriously. There are rules in place for the real rats. Seriously.

Do you fit the profile for this trial? Here’s the checklist:

  • Are you post-menopausal? It doesn’t matter if it happened naturally, surgically or through ovarian suppression.
  • Has your cancer spread outside of your breast?
  • Is your cancer ER+ or PR+ (either one will do)?
  • HER2 negative?
  • Have you done only one line of endocrine treatment since the disease metastasized? In English, did you take tamoxifen or femara or arimidex and only one!

All yes responses to that group? Let’s continue. (Yes responses to these questions will likely result in being ineligible.)

  • Have you been treated with chemotherapy since your metastasis? If so, you may not be eligible but definitely check with the researchers.
  •  Have you already been treated with fulvestrant (Faslodex) or everolimus (Afinitor)? If so, unfortunately, you will not be eligible for this particular trial.
  • Has your cancer spread to your central nervous system (i.e. brain mets)?
  • Do you have inflammatory breast cancer?
  • Inflammatory breast cancer patients or those whose disease has metastasized to the central nervous system, this trial isn’t for you. We’ll find others.

There are obviously many other items that will determine inclusion/exclusion but those are the ones that jumped off the page for me.

A little about the trial and what to expect:

  • The length of time for participation is 36 weeks.
  • You will need to be at the test site for approximately 15 visits. This is a multi-center trial. A list of locations is included in the eligibility link below.
  • In the beginning the visits will be frequent and then taper off.
  • There is no cost to you to obtain the drug or any of the testing.
  • Travel may be reimbursed.
  • You will be randomly assigned to receive the real medication or a placebo.
  • All participants will be treated with fulvestrant which is currently one of the standards of care for metastatic disease. My mom is already on fulvestrant but was ready to step right up until I told her she wasn’t eligible.
  • The purpose of this trial is to determine if combination therapy of the fulvestrant and the investigational drug is better than fulvestrant alone.
  • THIS IS THE MOST IMPORTANT PART OF THE POST: You can read more about the study on Trial Reach where there is a link to the complete study information on clinicaltrials.gov.

Why do this? You may be helping yourself. And who knows, this might be the next big thing and you may be part of something that help us finally turn a corner. I’ve participated in a number of trials and I wouldn’t hesitate to join another. I hope you feel the same way. Without us, there will be no advances. Having a trial not meet accrual goals in an expeditious fashion is a waste of precious resources. Closing promising trials because goals are not met is a story for another day. But, it does, indeed happen. And the reason?

Primarily because we simply don’t know we are needed.

Now, you know.

Please do share this! It’s important. Lives depend on it.


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AnnMarie Ciccarella: On the Importance of Clinical Trials

Clinical trials save lives.

Research is where the answers lie.

Without research, there are no clinical trials.

Without clinical trials, people do and will continue to die.

Without people, trials can not take place.

So the real question is this. Have you stepped up?

Too many people equate participation in clinical trials with being a lab rat. Let’s take a moment to dispel some myths or clarify some facts. First the basics.

The very first basic simple truth: Navigating clinicaltrials.gov can be extremely frustrating, even to the most seasoned doctors. Since the very first step is knowing where to look for these things, there are platforms out there to help make the process easier. Social media is changing the way researchers and participants connect. We should be doing this faster, better and more efficiently.

Now some background and general facts.

Clinical trails must adhere to the highest standards to protect trial participants. There are laws in place to ensure the risk associated with any research is no greater than the normal risks inherent in every day living.

When you make a choice to participate in a clinical trial, first and foremost, you will always receive the best evidence-based medical care currently approved and being used to treat the condition or disease being studied.

With those two things in mind, yes, there are risks associated with clinical trials but any new medication that is granted approval to proceed to human testing has already undergone rigorous studies in a petrie dish, on a lab slide and generally, in animal studies. Only after the safety has been established throughout that process, can a drug proceed to trials using real people. Human clinical trials run in phases, too. For this conversation, let’s focus on the last leg of the human trials, the Phase III trial.

By the time a drug is approved for phase III trials, the researchers have already determined its safety, identified most of the short term side effects and it’s already shown the new drug or drug combination may be more beneficial than the current standard of care. And that’s the biggest and most important reason to consider joining a trial for which you may be eligible.

I wish that I had paid more attention to this when I was diagnosed with invasive breast cancer. I know there are trials I would have sought to join. The thing is, the guidelines are set in stone and if you choose a treatment before knowing all of the available options, you can’t unring the bell. You may have excluded yourself from being among the first to gain access to a drug that could take years to become available to the rest of us. The process from trial to results to publication to approval is long.

Few of us are told to look at clinical trials as our best first choice for treatment and when we are diagnosed with a serious disease like cancer, the knee jerk reaction? Get.It.Out. Preferably yesterday. For those whose disease has spread, the sense of urgency takes an exponential leap. And this is the moment to stop. Breathe. Explore every option. And then make a decision.

To paraphrase my friend, Jack Whelan, why settle for standard of care when participating in research may actually be a better course of treatment?


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A story of survival and fellowship

I am always so grateful to have the opportunity to talk with patients at TrialReach; every day I hear stories of incredible courage in the face of devastating disease.

I have to say though, and maybe for personal reasons, the women I have spoken to recently about a Breast Cancer Trial, have really touched me to the core.  This trial is for women who have locally advanced or metastatic disease.

In 1996, at the age of 37, I was diagnosed with breast cancer.  I had two young children and the first thought at hearing the word cancer was that I was going to die and who was going to take care of my children? At the time they were 10 and 6 years-old.  I was very scared and to be honest, fear ruled me for a long time after the initial diagnosis.

Education and insight into the disease were what empowered me and gave me the feeling of having some control over my life. At the time the internet was not the information highway it is today – so armed with pen and pad I went off to the library and took from the shelves every book I could find on breast cancer.  I sat on the floor surrounded with my army of books and started to read through it all. My faith kicked in and gave me the inner strength needed to complete the simplest of tasks.

Some people prefer to hand everything over the doctors – what you don’t know won’t hurt you. I was not one of those people, I needed to do something, I needed to know what I was facing. I wanted to know everything I could about cancer, chemotherapy, radiation, potential options for surgeries.  Why an ordinary cell going about its daily business, turns from a healthy cell to a cancer cell.  What the difference was from a well-differentiated cell to a poorly- differentiated cell and how the rate at which this happens can determine how aggressive the cancer is.  I wanted to know it all, as much as my brain could take, down to the minute detail.  Thankfully, I had a doctor who was very supportive and took hours explaining and drawing pictures so that I understood exactly what was happening.

One of the things I discovered was that my surgeon knew a lot about his specialty – surgery.  He could not answer many of the questions I had about radiation, about chemotherapy or even the pathology.  So I pursued the ones that did know and with my folder under my arm, I started to pound the pavement, knocking on office doors.  I demanded answers to my questions.  I remember one day before one of my biopsies asking to meet with the Director of Pathology at the hospital because I wanted him to know that I was not just a tiny piece of tissue under a microscope.  I was a woman, a wife, a mother, and daughter and that “I” mattered.  So when he looked at that little piece of tissue under the slide he was reminded that what he does matters and that there was a whole family who were invested in me and my need me to survive this.

I could go into the whole story but for today I just wanted to give you some background so that you understood why I am so inspired by the women I have spoken to recently.

First there was Lara, a beautiful young mum who discovered her breast cancer at 30 years old when she was pregnant with her second child.  She was sent a gift of beautiful scarves that had been worn by another survivor, with a message of hope: “You can do this”.  After she had completed her treatment, she passed those scarves along to other women.  The wish was that when a woman wraps a Hope Scarf around her head she would feel the strength and determination of the women who wore it before her.  With that “Hope Scarves” was born.  Please feel free to go to the website where you too can read about the organization, tell your story or request or donate a scarf to this amazing cause www.hopescarves.org.

Another cancer advocate I admired greatly researches all kinds of state-of-the art treatments and clinical trials for her husband who is living with breast cancer. She herself is a warrior for the cause and will not sit down and let cancer take from her the life she has come to know and love.

Many of the women have come together and started Facebook groups.  A lovely lady invited me to become part of her group “Breast Cancer Champions”. An extraordinary group of women reaching out with open arms to support others who are living with the breast cancer diagnosis.

Others have become bloggers and tweeters.  A wonderfully inspiring, enthusiast I spoke to, AnneMarie, really hit me with her story and I connected with her immediately.  She is a fierce advocate, activist and blogger.  She is the epitome of a woman empowering others to stand up and fight cancer.  She attends conferences and spends much of her time working with others.  She also has a website dedicated to breast cancer and getting the word www.chemobrainfog.com.  Her blog was voted as one of the best cancer blogs in 2014 by Healthline.

There are many people out there looking, fighting, disrupting and calling for change.

Lastly, I would like to leave you with this thought.  When speaking to a lovely woman recently, I asked her what it was that made her want to participate in a clinical trial and what she had to say left me speechless, she said “I thought of all the millions of women that have participated in clinical trials before me so that I could get the treatment I have today”.  It really made me think – I may not even be here today if it was not for all those women, and for that I say “thank you”.

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“Be the change that you wish to see in the world.”

― Mahatma Gandhi

 


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TrialReach Raises $13.5M Series B Led by Smedvig Capital

We’re excited to announce that we have raised  $13.5M in a funding round led by Smedvig Capital. This will fuel our clinical trial platform growth and expansion into the U.S. You can read the full press release below.

London, U.K. – Feb 5th, 2015 TrialReach, the world’s largest provider of clinical trial information, today announced it has raised a $13.5M Series B financing round led by Smedvig Capital with participation from existing investors Amadeus Capital Partners and Octopus Investments. With one of the biggest digital health rounds ever raised in the United Kingdom, TrialReach plans to use the funds to support the growth of its clinical trial platform and expansion into the U.S..

Founded in 2010, TrialReach is helping to solve one of the biggest challenges in medical research: connecting patients with clinical trials. One in five cancer trials in the U.S. fails to find a single participant, and only three percent of adult patients participate in cancer research, simply because most patients don’t know that clinical trials are an option for them. For pharmaceutical companies, trial delays can equate to over $8M of lost daily revenue per drug, while for patients, delays reduce the number of potentially life-saving drugs that are available to them.

“We have had significant success in the U.S. market to date, and we are confident that now it’s the right time to scale up our team and operations domestically, in order to solidify our leadership position,” said Pablo Graiver, CEO, TrialReach. “Smedvig has significant experience working with early stage tech-enabled businesses. Their hands-on support will accelerate our plans to become the industry standard for pharmaceutical companies seeking patients for clinical trials. We eagerly anticipate the opening of our New York office to jumpstart our business and sales efforts across the U.S.”

Unlike other clinical search sites, the TrialReach platform is designed to aggregate and structure all clinical trial listings worldwide, so that patients can be smart matched with the specific trials for which they may be eligible. In addition, the platform gives trial sponsors the opportunity to describe trials and patient criteria in a non-clinical manner that’s much easier for patients to understand.

“TrialReach’s bold online marketplace approach offers a solution to one of the biggest problems in the pharmaceutical industry – matching patients with clinical trials”, said Jordan Mayo, a Managing Director at Smedvig Capital. “TrialReach’s platform can reach and help millions of patients with chronic and life-threatening diseases, and address a huge and underserved market opportunity. We believe they are well placed to expand rapidly to the significant benefit of pharmaceutical companies, clinical trial practitioners and patients.”

TrialReach is already working with many of the world’s leading health organizations, including the WHO, and more than half of the top 25 pharmaceutical companies are using TrialReach’s platform to support their clinical trial efforts. In addition, TrialReach reaches millions of patients online through partnerships with major health portals including Healthline, Everyday Health and CenterWatch as well as some patient networks such as WEGO Health and CureClick.

About TrialReach

The TrialReach platform is helping to solve one of the biggest challenges in medical research: connecting patients with clinical trials. Our mission is to empower millions of people to participate in clinical trials across the world to develop new medical treatments and find cures faster. TrialReach was launched in 2010 and is based in the U.S. and London, U.K. For more information, visit http://www.trialreach.com.

About Smedvig Capital

Smedvig Capital was founded in 1996 and has invested over £600m of internal capital. They invest £2-15m in fast-growing innovative businesses, backing ambitious teams with the potential to become market leaders.

Smedvig Capital’s model is to invest in a small number of businesses each year, and then commit time to working closely with management, providing advice and hands-on support.

Smedvig invests across a range of sectors; previous and current investments include a number of tech-enabled businesses such as Zipcar/Streetcar, myhomemove, Quill Content and Tusker. For more information, visit http://www.smedvigcapital.com.

About Amadeus Capital Partners

Amadeus, www.amadeuscapital.com, has an 18 year history of successful technology investing. Since its inception, the firm has backed over 90 companies from 10 funds totalling over $1bn in cumulative commitments. Amadeus has a presence in the UK, Sweden, US, India and South Africa and the team has deep experience of technology. Major businesses built by Amadeus include Optos (LSE:OPTS), Solexa, acquired by Illumina Inc. (ILMN), and CSR (LSE:CSR).

About Octopus Investments

Octopus is a venture capital investor who backs talented people with the potential to build big businesses. Our focus is on identifying entrepreneurs and fast growth companies that can scale explosively to create, transform or dominate an industry. The Ventures team has a proven track record of helping build exceptional global businesses, including Zoopla Property Group, Secret Escapes, SwiftKey, graze.com and YPlan. The Ventures team is part of Octopus Investments, one of the UK’s leading investment management companies specialising in smaller company investing, with more than £4.7 billion of assets under management.

http://www.octopusinvestments.com/

Media Contacts 

Sarah Kerruish

TrialReach

sarah@trialreach.com

+44 (754) 636-4484

Jordan Mayo

Smedvig Capital

jm@smedvigcapital.com

+44 (207) 451-2100


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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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