Lennu - Finland's First Dog

Almost overnight, Finland's first dog Lennu has become an internet sensation.

Kelly Weill a reporter at the Daily Best posted photos of the five-year-old Boston terrier on Twitter on Tuesday. So far, she has more than 132,000 like and nearly 46,000 re-tweets.

excuse me but are you aware of Lennu, the Finnish president's dog pic.twitter.com/sBVSOiExw6

— Kelly Weill (@KELLYWEILL) February 22, 2017

A quick scroll through various social media feeds confirms that President Niinistö is a dog lover after our own hearts.

Savanah the Wonder Dog

Editor's Note: Author Heather Field Ruggiero, RN, BSN, worked as a nurse, facilitating patient care for a comprehensive medical clinic. She currently coordinates and facilitates Facebook groups for Rare New England. 

Though investigations are ongoing, the current line of thinking is that along with a slew of other diagnosis' I have PNKD (Paroxysmal non kinesigenic dyskinesia).  I was paired with my service dog, Savanah 6 years ago (the beginning of the month). She is a hearing dog who started picking up on episodes I was having and did not know what they were only a few months after being paired.

I am a single mother of a special needs daughter, as well. I got her to alert me to sounds my daughter makes that I can't always hear. She has been a life changer for our family. Because she was picking up these episodes and sometimes it stressed her out, we made the decision to mold those alerts into a task and response for ours and her sanity. And that has been a massive help to our family. It was not till this past year I had a doctor I trusted with the abnormal movements I was experiencing because of horrible treatments I had received in Emergency departments several times, throughout my life. I was afraid to disclose what was happening even to him, but he was witnessing my declining health and an episode. He was one on only a handful of incredible doctors I have had in my life and I will be forever grateful for him. I have a few rare disease diagnosis' and the funding for future research and treatments is not just necessary it is often a matter of life and death for patients. So I want to do what little I can. This is my Savanah, my heart dog.

Make a donation in Heather & Savannah's honor in the Virtual Walk.

Happy President's Day - Meet Truman and Coolidge

Editor's Note:  Guest blogger, Janet Hieshetter has served as DMRF Executive Director since 2004. She has over 25 years of experience in non-profit, disease organization management.  She has also been invited to join the National Advisory Neurological Disorders and Stroke Council, the advisory organization to the NINDS, and chairs the American Brain Coalition.

Several years ago while attending a DMRF scientific workshop and after a productive day of discussing the direction of dystonia research, I had the pleasure of dining with the Foundation’s Scientific Director, Dr. Mahlon DeLong and several other researchers. The topic of dogs came up – the funny things they do, what kind of mischief they get into, and what they mean to us. The conversation went on for thirty minutes or so and one of the researchers at the table was silent and looked bored. He didn’t have a dog. Later he mentioned to me that he was surprised by the table talk – really – people talk about their dogs like that? He was polite but I could tell thought the dog talk might have been a bit much.

About a year ago I got a call from this same researcher. After heartfelt begging from his youngest daughter – his family got a dog. He called to tell me that he now understood why we had gone on and on about our dogs! He then went on to share a couple of stories about his dog with me. I guess the point is – people who don’t have dogs have a hard time understanding how those of us who do feel about our canine companions.

I have always had a dog in my life – they are part of my family. We currently have two dogs. Truman who is 14 and Coolidge who is 11. They are both yellow labs and are both nutty, wonderful, loving characters. They have comforted us when we were devastated by the loss of a loved one, snuggled when we have been under the weather or just had a lousy day, helped my kids learn how to care for others and learn responsibility, and they have helped us celebrate good times like a Cubs World Series victory.

People ask us now that we are empty nesters and when our current dogs leave us, would we get another dog. My answer is confirmed every time I walk in the door and am greeted by the enthusiastic tail wagging pups who are so glad to see me – Absolutely – can’t imagine life without a dog in our house and in my life. They are work, certainly, but the love and companionship they give back is the best bargain on Earth.

You can donate to support Truman and Coolidge online here.

February is Going to the Dogs

The DMRF is more than a non-profit organization intent on curing dystonia; the DMRF represents a community of people who understand and welcome one another. The strength of the DMRF is rooted in the dedicated volunteers who contribute their time and energy to building a brighter future for those touched by dystonia and creating opportunities to bring the community together.

The DMRF Dogs for Dystonia campaign is part of a nationwide effort to educate the public about the difficulties faced by those with dystonia as well as the important role that dogs play in many of our lives. Throughout the month of February, dog lovers are invited to join this fun campaign to raise dystonia awareness and funds for urgently-needed research.

If you have dystonia, or care about some with the disorder, you can help us continue to do the important work that we do. Two ways to support the campaign:

1 - Register for $15.  All participating dogs will be featured on our web site and have the opportunity to raise money as part of our Virtual Team.   Register online and meet the 2017 Virtual Team!

2 - Order a T-Shirt for $20.  These new shirts feature the Edith Wharton quote about dogs being a 'heartbeat at our feet' and are only available to order from February 14-28.  These shirts will be shipped in early March.

Minnie: Helping to Untwist My Life

Editor's Note: Guest blogger Erin Marshall was diagnosed with generalized dystonia. Dystonia is referred to as generalized when it affects the limbs, trunk, and mother major body areas simultaneously. Click here to support her fundraising efforts. 

I picked Minnie up from a local rescue when she was 7 weeks old. I walked in to see her sitting patiently, and I immediately knew she was the pup for me. That was a little over a year ago.

Dystonia has twisted my life around (quite literally) for about two years now. Minnie makes living with generalized dystonia a little easier for me. She applies deep pressure on my legs when they are in excessive pain, alerts to when I am about to have a dystonic episode, and keeps me safe during them.

She does a lot of tasks to help me, but we need your help in order for the DMRF to work to find a cure so that many people affected by this disorder have the chance to live a life with fewer obstacles in it. Please consider donating to the Dogs4Dystonia Virtual Dog Walk to help make this happen.

Doing Better

Editor's Note: Jessica Feeley has been on staff at the DMRF since 1998. She is the editor of the Dystonia Dialogue magazine and moderator of many of the DMRF online forums.

It’s a joke, but not, that in moments when I feel like I need to be a better person, I aspire to be more like my dog.

As far as I can tell, these seem to be Cici’s rules for life:

• Be enthusiastic about pretty much everything (especially cheese).
• Greet people with joy.
• Be brave even when it’s clear you are nervous.
• Kiss a lot.
• Don’t be afraid to eat weird things. Or, what the heck, roll around in them.
• Don’t irritate the cats.

I often find myself considering these nuggets of dog wisdom in reaction to the extraordinary humans I am in contact with every day.

I have been on staff with the Dystonia Medical Research Foundation (DMRF) since 1998. Like most people, I did not know what the word dystonia meant until I had a reason to learn it. Fortunately, my reason was a job, not a diagnosis. I learned quickly that dystonia teaches hard lessons. The rules dystonia imposes are unfair. The consequences can be physically, medically, emotionally, socially, financially, and spiritually devastating. Early on, I would meet people and talk to them and hear their stories and think to myself, I don’t know how you do it. I don’t know how you live with this disorder. The remarkable people I have been privileged to meet over the course of my time with the DMRF taught me how. It’s a life lesson I have taken to heart. How do you do it? You just do. It’s that simple. It’s that hard. And those who are diagnosed with dystonia, or have a loved one who is affected, do it every single day. That’s why the work of the DMRF is so important. No one should have to endure dystonia alone.

The Virtual Dog Walk brings together two things that mean a lot to me. I love my silly brown dog. She makes me smile. She makes me feel good about myself. And I feel fortunate to be a part of the DMRF. My job reminds me to take nothing for granted. It humbles me. The innate dignity of the human experience is not loud or conspicuous. It is the quiet, spectacular power that propels us from one year, one day, one minute to the next, even when we’re not sure how or if we will make it there. Many of you reading this blog have taught me this, probably without realizing it, so thank you.

Cici is collecting donations to support medical research toward a cure for dystonia and programs that support and educate patients and families. Please give what you can: www.dystonia-foundation.org/cici. Thank you for your support!

Blue to the Rescue

Editor's Note: Guest Blogger Lisa Troub was diagnosed with Rapid-Onset Dystonia Parkinsonism (RDP) in 2013. She considers herself lucky to have two great guys in her life, happily married and canine mom to Blueberry.

I adopted Blueberry in January 2015 from the Arizona Humane Society. We had an instant connection, and the rest is history!

Blueberry comforts me all the time especially when I am too fatigued, and we will nap together. He tends to look back at me on our walks as if he is checking on how I am.

Blueberry has a great sense of humor: whether he has the zoomies or needs belly rubs, he keeps me laughing. He loves car rides, and being my co-pilot. She shared "Six Things My Dog Has Taught Me" on her Little Writings blog.

Please help Blueberry and Lisa find a cure for Dystonia by donating to the Dystonia Medical Research Foundation’s Dogs4Dystonia Virtual Dog Walk!

Lily - Always There for Me

Editor's Note:  Marya Mesa is the author of the Chronic Mom Life blog where she shares her journey in dealing with her own dystonia and being mom to four great kids with multiple special needs. Her family includes four canine companions: Bridget the Cairn terrier (16), Luna the Bullmastiff (10), Bruiser the Bullmastiff (8) and Lily the Jack Russell (1).

I was diagnosed with cervical dystonia in 2010. The symptoms came on fast and furious. It also left me mostly incapacitated for close to a year. It was devastating and as a special needs mom, I became overwhelmed with anxiety. I didn’t know how I was going to handle everything. I’ve come to appreciate my dogs more than I ever did. They provide a much needed distraction from the near constant pain and limitations that I struggle with. Like many people with chronic illness, I’ve become pretty housebound. When the rest of the world is too busy to notice, my dogs are always there.

I’ll start with Lily, the youngest of the bunch. With my physical limitations it probably seems a little crazy that we got a hyperactive Jack Russell Terrier, but I’m so glad that we did. There is never a dull moment with her and she always has us laughing with her antics, whether chasing around something outside, burrowing in the couch or one of her crazy blanket creations that she makes before she settles in. Lily has to go out a lot to burn off energy. We live in the country with 2 fenced in acres so I just have to go outside with her. Even if I don’t feel like walking, I can just sit down and watch her run. She is one of the most faithful dogs I’ve ever owned...she instinctively knows when I’m not well and stays very close when I’m struggling.

Read more about Lily and meet Marya's other dogs on the Chronic Mom Life blog.  You can also join the 2017 Virtual Dogs for Dystonia Walk.

Reno Goes to Washington

Editor's Note:  Guest blogger Maddie Paolero from Portsmouth, Rhode Island, along with her family and faithful companion Reno, are longtime DMRF supporters and regular advocates for the legislative and policy needs of the dystonia community.

This month my dog Reno will be raising funds for the Dystonia Medical Research Foundation as he takes his regular walks around the block, and sometimes just half a block, depending on how his hips are doing.  The Virtual Dog Walk for Dystonia is a perfect way to raise funds for this great cause without traveling, dealing with weather, or having to walk a set route.

Reno doesn’t understand fundraising or advocacy, but we’ve had many fun and challenging times together at DMRF events through the years. We live in Rhode Island, the smallest state, but that hasn’t kept us from having big plans. Reno and I have made three trips to the Dystonia Family Symposium in Chicago together, sharing what he does for me as a skilled companion dog with the kids and families there.  He even took a dip in the hotel pool there one year!

He’s also made three trips to Washington, DC with me as part of the Dystonia Advocacy Network. Our group from Rhode Island and Massachusetts shared our stories of life with dystonia and how our legislators can help the dystonia community.  Going on one of these trips is a huge undertaking, with the plane trip, the shuttles and taxis, walking back and forth to appointments in the Capitol Building and Representatives’ offices, and trying to time his potty breaks for when we’ll have a stretch of grass.  Last year poor Reno stepped on a bee in front of the White House and he limped the several blocks back to the hotel.  We’re hoping to make the trip again this March, so a touch of arthritis in his hips will probably seem like a piece of cake compared to that!

Our two Zoo Walks for Dystonia through the Providence Zoo were wonderful, too.  If you’ve never been to the zoo with a service dog, you’re missing out! The otters and monkeys especially love Reno, while the cheetahs show off their stalking skills.  Having friends join our team and spend the morning with us at the zoo does as much for me as the money we raise does for the DMRF.

Reno and I have visited every classroom at Saint Philomena School (Preschool through grade 8) where my mom works, and many of my classes as I went through Portsmouth Middle School and high school. The kids always have a lot of questions about dystonia, and are almost as happy to donate to the DMRF as they are to get to shake Reno’s paw.

Yes, Reno has been a great sport all these years, and I love every day with him. This virtual walk is perfect for Reno. He can just chill and walk to the corner, sniffing his favorite spots along the way, then come home and curl up in his senior dog memory foam bed. Meanwhile, Mom and I will do a little work to get the word out online and raise some funds for the DMRF in his honor.

Please join us by registering for the virtual walk or sponsoring a dog, any dog even Reno! Thank you.

How Fender Changed My Life

Meet Fender, Michael Holtvluwer's service dog. Fender is a 70-pound labradoodle. He is a rescue dog who was donated to the Sterling, CO prison by a woman who couldn't afford to feed or pay the vet bills for him and his brother Bongo. She thought they were very smart and told the prison if they passed the qualification testing for a service dog they could have both dogs. They both qualified and were trained by prisoners for 3 months in the prison and then transferred to Freedom Service Dogs of America in Denver where Fender was trained for an additional 7 months.

Fender was assigned to Michael in Nov 2012 and Freedom Service Dogs trained Michael and his dad on Fender's skills for 3 weeks. At Fender and Michael's graduation there were 8 dogs. Four of the dogs went to Veteran's who suffered from Post-Traumatic Stress and the other four went to people with physical disabilities.

Michael has a physical disability called Dystonia, a central nervous system movement disorder characterized by persistent or intermittent muscle contractions. Michael loves to play golf, ride horses at HorsePower (a therapeutic riding class), watch sports and listen to music.

Michael had deep brain stimulation surgery (DBS) in Jan 2009 and it really helped stabilize his upper body, however, it had a negative effect on his walking. Fender wears a harness that Michael can hold onto in order to help his walking. Fender also picks up things for Michael, pushes the handicap button to open doors, acts as a brace for Michael to help him get up from the floor, closes doors, and if Michael needs a parent and they are upstairs he will say "Find Dad" or "Find Mom" and Fender will look in every room in the house until he finds one of them.

Fender also provides companionship and has greatly enhanced Michael's self-confidence. When Michael first got Fender and was asked how it changed his life he said "Dad, it used to be that when I went somewhere out in public people would stare at me because I walk different. Now, whenever I go somewhere in public, people look at me and Fender and they smile! My whole world has changed".

When Fender is wearing his service dog vest he is a working dog and it is not appropriate for anyone other than Michael to pet him or try to get his attention. The best thing to do is ignore Fender and focus on Michael. If you want to pet Fender you need to ask Michael and Michael will give Fender a command that temporarily releases Fender from being a service dog and then you may pet him. When Fender is not working he loves to chase a ball, take walks around the neighborhood and play with Mike.

Join the Dogs for Dystonia campaign at www.dystonia-foundation.org/virtualwalk. 

Making Room for Bentley

Editor's Note: Denise Gaskell is the founder and co-administrator of the DMRF’s Cervical Dystonia Support Forum and a longtime DMRF member, supporter and legislative advocate.

I belong to a group called One Golden Retriever is Not Enough. This is where my our story begins. My husband and I had two goldens Bailey & Tucker.  They were amazing in their own special ways. We loved them dearly, then the days came when they crossed the Rainbow Bridge.  How devastating that was.  I thought that was the last of my days owning a dog.  Time passed and my husband Greg decided he certainly wanted another golden.  I didn't think I could ever welcome another pup into my heart.  Learning that this was so important to Greg, he told me how for each and every day that we had Bailey and Tucker, all the joy they provided us, that exceeded the pain of having to let go.  I agreed. So our journey began.

We visited the shelters, called breeders and visited their litters and time passed.  Me still knowing this was going to be "Greg's dog".  It was "his need" he wanted a buddy.  Going through a network of breeders I came upon a local lady who was going to have her first litter.  We went to visit her and the Momma.  While getting to know each other she told us that all three of her children had special needs and that two of them had Service dogs. Service dog?  HHMmm...

Falling into a friendship with her we decided this was who we wanted to go with and put down a deposit.  She notified us when these precious little pups were born.  We wanted a girl.  Thinking in the past just how smart Bailey was and how independent Tucker was, though both quite loyal.    The day we visited was just so sweet.  These little fluff balls playing in silly curiosity.  Except for the girl, she was off alone and snapped when the others tried to nudge her.  This behavior concerned us.  We weren't completely opposed to a boy, as this was "our litter!"  Watching them, learning more about their shades of coloring we decided on a sweet boy full of fluff who we named Bentley.

As the weeks passed excitement set in and our daughter even came home from Chicago to carry the little guy into our home.  Oh pure joy & energy!  Greg went to work during the day, while dystonia kept me home.  I tried to keep up with Bentley's energy!  In a short time I realized that he was quickly picking up on my my difficult dystonia moments.  He would sit by or on me licking in true contentment.  We were bonding.  Immediately we started puppy classes and Greg was to be the handler so that they could bond better.  They did wonderful and Bentley was the star of each class as we progressed through each stage.  I also took leadership at home as we worked on homework.  He grew, and we all grew.  Our love and joy grew.

Also, Bentley grew to stay by my side constantly, which gave me so much courage, confidence and stability.  Teaching him more skills, he tested and became my Service dog!  He and Greg look forward to playtime daily.  They do have their special bond and occasionally you'll hear Greg whisper in Bentley's ear "Mommy stole you from me, you were supposed to be my dog!"

My Ellie Bellie

Editor's Note: Pam Sloate is a health activist and a Board of Director at the Dystonia Medical Research Foundation where she established the The Martin & Roberta Sloate Dystonia Research Fund. She is the author of the popular Dystonia Muse blog.

As the Dystonia Medical Research Foundation honors our canine friends this February with their Dogs For Dystonia Virtual Walk, I'm moved to consider all my miniature schnauzer - Ellie - has meant in my life and the invaluable lessons she has taught me.

Bright-eyed and bubbly, loving, loyal and eternally optimistic, Ellie has infused my world with her exhilarating jubilance and unwavering affection. After an eon navigating life as a solo act, Ellie is a beacon of light brightening my days. She's my steadfast companion virtually everywhere I go and I've connected with a cornucopia of maternal instincts that have long simmered beneath the surface yearning for expression. I wholeheartedly embrace my role as Ellie's momma and find myself reveling in the joys of motherhood.

With the dramatic improvement in my gait post DBS, my energy level has risen closer to - though certainly not matching - Ellie's and we've become partners in crime, exploring the neighborhood and local parks with vigor. Indeed, the changes Ellie has wrought in me are a huge reason why I reached for the brass ring and embarked on my DBS journey. Ellie is my most enthusiastic cheerleader of my newfound mobility and we celebrate our new life every day!

Ellie and I are thrilled to participate in Dogs For Dystonia to pay tribute to our faithful canine friends and the countless ways they enrich our worlds. We proudly join with the Dystonia Medical Research Foundation, fellow patients, friends, and their pets to celebrate our hope that one day we will indeed eradicate dystonia!

I encourage you to visit the Dogs For Dystonia website, where we’ve enlisted our “best friends” as fundraisers and share our heartfelt stories of how our pets have changed our lives:

Click here to visit the Dogs for Dystonia Website. Ellie invites you to join her by registering your dog: Dogs For Dystonia Virtual Walk

Ellie is committed to curing Dystonia! Click here to make a donation: Donate In Honor Of Ellie

Snoops - A Girl's Best Friend

Editor's Note: Author Ginny Bryan was misdiagnosed for over 20 years before being diagnosed with myoclonus-dystonia, a complex and debilitating movement disorder. Bryan is currently a member of the DMRF’s Community Leadership Council, has contributed to the Dystonia Dialogue and presented at DMRF meetings and events. 

Snoopy Brown Bryan, affectionately known as “Snoops,” is my best friend.  With Snoops, I am completely un-masked, whole and calm, and my dystonia symptoms are not a worry or a thought while we handle the day ahead. My social/emotional and physical well being has improved since Snoops has been by my side the last year and 5 months. Snoops’ is known as a “gentleman,” and often can be found wearing a tie or bowtie, or some sort of outfit. He takes the pressure off of trying to fit in the crazy twist and turns of trying to be a 35 year old independent woman living with a chronic condition that requires balancing wellness, while trying to “fit in,” with my peers and the communities I am blessed to be a part of.

My anxiety, depression, and social fears, are less pronounced and I am more able to use coping mechanisms with Snoopy by my side. I let go of trying to mask my pain around him and that gives me more ability to go out in the world feeling better after letting go for a bit. He lies right on me or beside me while I fret or ruminate. And, when I get too tired and have to cancel plans last minute (with my extremely understanding, faithful and patient friends), I snuggle with Snoopy.  He seems to know when I need him right beside me.

He is my buffer to the world as others focus on him while we are out (and I feel so happy that he has quite the fan club). During social situation, Snoops is the topic that usually others ask about first, and it is an easy topic to speak on, to ease into a social situation. In the last year, I have gained confidence to join different activities and meet new amazing human friends.  I have rekindled human friendships through doggy play dates.  I help a friend out with her dogs when she is working.   That has helped a lot because I love feeling needed. Snoopy also did some therapy work at a local counseling center to bring cheer and ease in the waiting room. It is a joy to be able to share him.

Snoopy has helped me become more physically balanced thanks to our twice-daily walks.  Because I live in an apartment complex and he cannot be off-leash, we have to go on walks even if it is snowy, raining, sunny, or hailing or freezing as Buffalo can be!

This might sound silly; yet, I feel very lost and sad when I am without him, especially on trips when it would be too unfair to him to bring him- we are that bonded. Love is a wonderful feeling, and can open up ones’ world beyond your wildest imagination, even living with such a terrible, chronic, very rare type of dystonia. Snoopy is pure love, and in turn, has made the good days that much better, the setbacks okay while he lays beside me and I cry into his fur, and all the days in between. I am so happy that Snoops came into my life.

Violet - The Ultimate Service Dog

Editor's Note: Dee Linde and Violet have provided education about service dogs for many dystonia affected families, including presenting at the DMRF Family Symposium in 2016. Dee has also testified before Congress about dystonia among military personnel due to the connection between dystonia and traumatic brain injury. She is a Dystonia Support Group Leader and plans the annual Portland Dystonia Zoo Walk.

I first met Violet on June 21, 2016 at America’s VetDogs, an organization on Long Island, New York that trains service dogs especially for disabled veterans. Our eyes met, and it was love at first sight. Violet has been custom trained for my needs. She knows many different commands, like “brace” to help me up when I fall,  

 or “phone” so I can call for help. 

She also picks up her “leash” if I drop it.  

By holding onto a special handle attached to her Service Dog vest, she helps me with my balance and counter- balance.

And when I need a kiss, she is always there, ready and willing…

Help Violet  & Dee find the cure for dystonia by donating to the Dystonia Medical Research Foundation’s Dogs4Dystonia VirtualDog Walk. Woof, woof! (That’s thank you in dog speak!)

Meet Nicki

Editors Note: Nicki and the Nachbar family were the inspiration and driving force behind the Dogs for Dystonia campaign. The DMRF is proud to feature Nicki as the first dog blog post.

Joanna and Nicki

A five and a half pound service dog? Yes, that's our Nicki.

Nicki's mother, a Pomeranian, was rescued by our daughter Joanna's friend. The mother had been abused and had a crack in her skull. She was pregnant. 

The friend told us that Nicki appeared to be exceptionally bright and responded to commands when she was very young. We adopted her and hired a trainer to teach her to be Joanna's service dog.

Nicki learned to know when Joanna has dystonic spasms and to jump onto Jo's lap and calm her. She was taught to be comfortable near walkers and wheelchairs and to walk a safe distance from them.

Joanna moved to a long term nursing home for young adults with physical disabilities. Nicki can't live there, but visits her mommy often. She knows how to get to Joanna's room and pulls us there. Nicki immediately jumps onto her mommy's wheelchair and kisses her. Mommy loves to drive through the hallways with Nicki on her lap. Everyone knows Nicki. Nicki pulls on her leash and tries to prevent us from leaving when we want to go home.

Nicki is a volunteer at the home and has an official ID badge. She visits the rooms of bedridden residents and comforts them.

We don't know Nicki's father. While my wife and others suggest a few canine breeds, I joke that it's a cat. Nicki acts like one. I call her a pomcat.

Nicki is the gift that keeps on giving.

To donate to the Dogs for Dystonia Campaign in Nicki's honor, Click Here.

Posted by: Len Nachbar (Nicki's grandpa)

Drawing of Nicki by Kit August

Dystonia Dogs Get a Blog

The Dystonia Medical Research Foundation (DMRF) has special regard for the role of pets because of the inspiration and support they bring to the lives of those affected by dystonia.

Dystonia is a brain disorder, much like Parkinson’s disease.  It causes extreme muscle spasms so intense that gait, balance, speech, and vision may be impaired due to the twisting, painful contortions. Dystonia is one of the three most common movement disorders, yet it is often misdiagnosed and patients can spend years without proper treatment.

In an effort to educate the general population about the difficulties faced by those with dystonia and the role that dogs play in many of their lives, in 2010, the DMRF launched a nationwide initiative called Dogs for Dystonia.  Each year in February, the campaign brings together dog lovers to learn more about dystonia while helping people to raise awareness and funds for research. Supporters can also hold dog walks in their local communities throughout the year.

For over 40 years, the DMRF has been a steadfast leader in dystonia research, providing support for the well-being of those affected by this disorder and raising awareness.  Because of our decades of work  we have a greater appreciation for the wisdom shared by Roger Caras that “Dogs are not our whole life, but they make our lives whole”.  This is certainly true for the families that will be featured on this blog.  If you would like to be a guest blogger on this site, please contact the DMRF at dystonia@dystonia-foundation.org.