2017 Research Funding Update

With the help of TEAM BEV, we just funded 4 research projects from the funds raised during 2017.  Collectively as a team, your donations and support are helping scientists dive in to study this disease and look for a cure for generations to come.  THANK YOU!

  • $100,000 – to Scripps Research Institute – Matt Disney – They have a series of compounds that they believe are brain entrant that affect many aspects of HD by targeting the CAG repeat.  They are near a real breakthrough and will use our funds to see if the compound can indeed be a breakthrough to treat HD.
  • $100,000 – to Oregon Health & Science Univ. – Jodi McBride (we funded her in 2015) – They have 3 significant ongoing projects that are using the monkey models that were developed with our funding in 2015.
  • $100,000 – to Massachusetts Institute of Technology – Myriam Heiman – Study of two genes that they believe regulate the toxic accumulation of mutant Huntingtin in the brain.  Our funding would allow them to perform the necessary therapeutic test studies in mice.
  • $50,000 – to Glycoscience Research – Larry Holler – continuing to work to get GM1 to clinical trials (we funded them in 2016)

A Day in the Life of Bev. Her Story, Part 13!

Interviewed: December 4, 2017 by Mindy Irish

It has been quite eventful since we last wrote.  Now in December, Bev has been busy preparing for the holidays and entertaining guests in their home.  Additionally, looking back since the spring, the family traveled for Spring Break to Anna Marie Island in Florida.  All four drove down from Indiana and took two caregivers with them to assist with care for both Bev and Katie.  They loved the time in the warm weather and the sand and a break from the Indiana cold!

Family in for Thanksgiving!

Another travel, Bev also attended a girls’ trip in May to Arizona, visiting Sedona and Scottsdale.  She traveled with her caregiver Pam and they were able to safely maneuver thru the airports.  Bev uses a wheelchair to get thru more chaotic situations and is grateful to be traveling and to have the help to do so!

Another big trip was on the agenda.  Bob and Bev celebrated 20 years of marriage by going to Aruba in October and enjoyed the trip and down-time together.  What a blessing to celebrate 20 years of marriage!

Celebrating 20 years of marriage in Aruba in October 2017!

Bev’s Huntington’s Disease is still progressing even though she is fighting a great fight.  Her medications are keeping up with her symptoms, but her movements are more pronounced.  Called chorea, she moves a lot when standing or sitting and her movements can be fast and jerky.  This impacts her balance and her walking, but she hasn’t taken many falls lately.  This is always a very big concern in the winter time, too.

In addition to more movements, she is also choking a lot more, even on water.  Choking is a common impact of the degenerative disease due to the change in the muscles all thru the body.  Foods have to be strategic and specially cut to help her chew and avoid potential choking hazards.  Since choking is more frequent, she tends to be eating less and in that, she’s losing weight and doesn’t have weight to lose.

Bev’s day-to-day systems have changed as well.  She is challenged with fine motor skills like opening Ziploc bags, meal prep, cooking, writing, and wrapping presents.  She uses talk-to-text when writing on the iPhone, but it’s often disjointed and hard to understand….all relative to what Siri picks up!

She has trouble with complex tasks and multitasking is extremely difficult.  Higher order thinking and reading are all being impacted, but Bev is still very optimistic.  To offset the challenge with the disease’s progression, she has found the Kroger “Click List” very beneficial when preparing her weekly grocery list.  It’s nice these services are available to make grocery shopping more feasible.

Attending a Colts game in the fall with Bob, her brother, and nephew.

Bev is still doing tennis one time per week and has also started a Pilates private lesson with an instructor and a friend.  She has caregivers that come into the home in the morning and evening and is also very thankful for three drivers that help her thru the week to drive her to errands, appointments, or just to grab lunch and shop.  Long live the shopping!

As we prepare for the Christmas season, the home is decorated and the tree is up.  Presents wait to be wrapped and more shopping is underway.  Even with the progression of HD, Bev is smiling, hugging like a bear, and welcoming everyone into her home with a smile and genuine conversation.  She’s winning this fight on HD from her spirit, mindset, and life outlook alone!


Save the date!  Our 9th annual Bev Hartig Huntington’s Disease Fundraiser is coming soon on April 28, 2018.  Save the date and please prepare to attend.  Our theme this year is “Team” and we need you to be part of this team to fight the great fight of this disease!


Stay tuned as we update a few times a year on Bev’s life as an Overcomer, living for the purpose of using her story to impact and change lives for the future!  If you desire to contact her, you can reach out to her on Facebook HERE or by email at bevhartig@hotmail.com

PS: Please make sure to like and select to “get notifications” from her Facebook page for frequent updates into our research progress and tidbits about the Hartig family throughout the year!



Bev’s Story and GlycoScience Research Update

Bev’s story: Listen to Bev’s 6-minute video

The BHHDF donated research funds to GlycoScience and here is an update:

I have been meaning to update you on our progress but we’ve been busy! Your funds have really moved this project forward.  With $100k we were able to get started on the pharmaceutical grade manufacturing with the GEAR (Graduate Education and Research) Center in Sioux Falls.  They were able to match the amount with $100k and have hired a PhD researcher, Dr. Aaron Harmon, who is in charge of the start-up manufacturing process.  We have known him since he was in graduate school and are very fortunate to have a researcher of his caliber on the project. We have biweekly meetings with Dr. Harmon and his team members, including Dr. Foss, Quality Control and Quality Assurance, and other researchers.  Their goal is to have the first lot of GM1 in the bottle later this fall.


The other $50k has gone to the GlycoScience Research lab at the Research Park in Brookings. Again we were able to use the funds to obtain another $10k in matching funds from a South Dakota Community Foundation Innovation Grant.  The lab at the Research Park has opened doors and has allowed for networking opportunities that have moved the project forward.  Thus far, with the help of a summer intern, we have been able to extract DNA from sheep blood samples and genotype over 2000 lambs to identify the lambs that are a rich source of GM1. Once tissues from these lambs are processed the GEAR center will extract and purify the GM1 to use when we are able to move into clinical trials.


Additionally, we have started working with Dr. Gary Dunbar at Central Michigan University.  Dr. Dunbar has done GM1 research for over 30 years.  He worked with Fidia, the Italian company that started with the cow source of GM1.  He is a strong believer in the potential therapeutic benefits of GM1.  He is also connected with the HD community in Michigan and shares our motivation to help HD patients and their families.

A Day in the Life of Bev, Her Story, Part 12, as written for the annual BHHDF Invite!

2014 6

Bob and Bev Hartig at the 2014 “Hoe Down” BHHDF event!


As written for the 2017 Annual Fundraiser Invitation: 

Greetings Friends and Family:

Each year we sit down with Bev to get an update to share with you on her year and progress as she battles HD.  This disease is progressive and we thank you for being part of her story!

It has been 18 years since Bev learned her biological father had Huntington’s Disease (HD) and that there was a 50% chance of having it herself.  She chose to take the test and the results were not in her favor.  She has been living with HD since she got her results for testing positive in 1999.

HD is a slow, progressive genetic condition that runs in families, and to date there is no cure.  Many with HD will die from falling due to lack of balance or from choking due to the inability to chew and swallow.  Bev’s father later died in his mid 50s from the impact of a head injury after he fell while living in an assisted-care facility.  She is forever grateful to get to know his story before his passing.

After the diagnosis, but without any symptoms, Bev and Bob lived in absolute silence about it for years.  She was still doing all she wanted to do in a full life, having her children, and working full time as a successful sales rep, yet her “secret” was tearing her apart.  She knew the only way to make it through this was to be real about her struggles, make her disease public, and help educate those around her with what was to come.  They had a “Coming Out” party in 2008, the “Bev Hartig Huntington’s Disease Foundation” and board were developed, and the “Team Bev” collaborative battle to fight and bring awareness to HD began.

Here we are in 2017 and a lot has transpired in ten years.  While there is no medication to slow down or cure the disease, Bev’s current medications help control her anxiety and depression.  HD is often described as a mix of Alzheimer’s, Lou Gerig’s Disease, and Parkinson’s, so mentally knowing what is likely to come is one the hardest parts of the battle for all involved.

To paint a current visual, if you don’t know Bev and you saw her in public, you might think she was drunk, to be frank.  Her movements are sharp, her balance is unstable, and she does not stand still.  Most recently when shopping in a grocery store with a friend, a store manager approached her and blatantly asked, “Are you ok?  Do you have something wrong with you?”  Bev smiled and kindly replied, “Actually, yes.  I have a degenerative disease called Huntington’s Disease.”  The manager apologized and realized his approach was extremely inappropriate.  This disease tears families apart.  It is destructive and debilitating, but Bev’s life is bringing awareness to the impact of HD.

A typical morning for Bev requires she take two full hours to get ready for the day.  The process of taking a shower, doing her hair and make-up, and getting dressed are daunting tasks, but she allows ample time for the routine.  Choking is becoming more frequent as she attempts to chew her foods.  The challenge comes from a combination of her tongue getting in the way and her oral muscles periodically failing to work in unison.  To combat this, she slows down as she eats, takes smaller bites, and stays away from foods such as tortilla chips and steak, which tend to be problematic.

To assist Bev in keeping her days productive, she has four hired assistants that share the role in the morning and evening to aid her with starting the day and getting the kids off to school.  She also has hired drivers transport her three times a week to appointments, grocery shopping, and errands.  “Tuesday Tennis” is still a fantastic social and physical outlet she is so very grateful she can enjoy….and also brings a big smile to her face!

At this point in the progression of HD, Bev has many positive outlooks, but she is most sad that she has lost her ability to drive.  When symptoms worsened, she discontinued driving back in 2013.  As an adult, slowly losing your independence for necessary tasks such as this is at the point in the crossroads where humility meets frustration.  Can you imagine?  She didn’t realize how much she’d miss this life freedom, but she’s grateful to be able to enjoy her eventful calendar like she does!

The family has turned their pain into purpose and Bev’s disease is now rippling large waves of impact through the HD community and into scientific research for a cure.  Since our start in 2010, now heading into our eighth fundraising event, the “Bev Hartig Huntington’s Disease Foundation” (BHHDF) has raised over $1,000,000, supporting three scientific studies and one Indiana program assisting other families living with HD!   Your continued involvement in their lives and mission is making a tremendous difference for families struggling with HD now and in generations to come.

 Thanks to you, Team, the waves of positive impact keep coming!

In great hope to cure HD,

The Hartig Family

Keep in touch with updates, pictures, and ongoing info about HD on our website and FB page:


Website: bevhartighuntingsdisease.com

Written and Interviewed by Mindy Irish and Pam Barr



A Day in the Life of Bev! Her Story, Part 11!

October 18, 2016

-Mindy Irish

I was able to catch up with Bev recently and we realized just how close we actually are to the 2017 annual event!  It’s just six months away!

Bev just returned from what she calls a “Bucket List” trip to Aruba with her friends Cecilia, Molly and Debby!  She had a great time and her favorite parts of the trip were down times around the pool relaxing in the sun, creating memories, shopping and having NO agenda!  Hurricane Mathew made an appearance and did interfere with some of the timing of their travels, but they conquered the storm and did not let it get in the way of their fun and their joy for having a great time!


So what is new with Bev these days?  She has a driver three days a week who comes in to take her about to appointments and grocery shopping from 10AM to 3PM on those days.  She also has morning and evening help most weekdays to help with her and the kids, but they so desire to have their list of assistants be longer!

She reports that she is falling more and is more unstable, in fact she told us during the interview that she took a fall when all alone in the morning, but was able to recover on her own.  Still, her demeanor about all this is so very positive and she won’t let it stop her from having a fantastic day!  She is happy to say she is sleeping wonderfully and is so grateful for being able to get restorative sleep and rest at night, often quite the opposite of what the doctors say to expect with this disease.  Her medicine is all still the same and they can only still treat the symptoms, as we all know, there is no cure for this disease.

What are the needs of Bev and the Hartig family at this time?  The Hartigs are in a big search with a few Au Pair companies to hire someone to live within the home to help them daily ongoing.  Additionally, they need more weekend help and more assitance for after school a few times a week, as it really is a two-person job to care for the needs of Bev and the children when Bob is working and traveling.  They ask that if you do know of anyone who has interest in these positions, please put them in touch with Bob Hartig!


Bev with Ms. Pam, her long-time friend and daily care giver!

Bev also requests the help of any gal who would want to come over from time to time to help her with projects around the home.  She wants to get some organization complete, some pictures transferred over, and tie up several projects with loose ends.  She also says a lunch date out is always part of the plan, too!

One of the most exciting events is that Bob and Bev celebrated their 19th wedding anniversary on October 12th.  They plan to get out on the town to enjoy a nice meal together.  What a gift time is!


SAVE THE DATE: The eighth annual Bev Hartig Huntington’s Disease Foundation fundraiser will be Saturday, April 29, 2017.  We are in process of finalizing the location and theme details and the committee will meet monthly from now until then to plan and strategize for the festivities.

We tied up our meeting with Bev just as her driver arrived to pick her up.  She had an appointment to attend and a lunch date to make, so she was off and out the door.  Bev lives each and every day as we all should….with gusto and gratitude.  She leaves no stone unturned!


Bev out with friends celebrating Bob’s 50th birthday!

Stay tuned every couple of months as we update on Bev’s life as an Overcomer, living for the purpose of using her story to impact and change lives for the future!  If you desire to contact her, you can reach out to her on Facebook HERE or by email at bevhartig@hotmail.com

PS: Please make sure to like and select to “get notifications” from her Facebook page for frequent updates into our research progress and tidbits about the Hartig family throughout the year!




A Day in the Life of Bev, Her Story, Part 10, as written for the annual BHHDF Invite!

2016 2


Greetings Friends and Family:

Our seventh annual Bev Hartig Huntington’s Disease Foundation event is coming soon!  Each year we will be sitting down with Bev to update you on her progress, her story, and share with you exactly where she and the family are on a daily basis as they battle this disease.  Bev is no longer able to write her own story, but she is able to participate in an interview, as shared from a February 8, 2016 interview below:


-Bev, please tell us about a typical day for you:

Bev-Since Bob travels a lot, we have paid assistants that come every morning and evening to help me get the kids ready for the day.  The person who helps me in the morning puts most of their attention on Katie, which enables me to devote a lot of my time to Ryan before he gets on the bus.  I like to be awake with the kids, help with breakfast, and enjoy some down moments sitting with them on the couch.


It takes me about two full hours to get ready to go anywhere.  My gross motor skills are impacted by chorea, which are jerky involuntary movements that affect my whole body.  They’re very noticeable now and you can tell my disease is progressing.  However, I’m still able to manage, but it does slow me down.  My fine motor skills are the real challenge.  Zippers, buttons, shoe tying and putting on jewelry are the areas I need daily assistance.  I still enjoy doing my own hair and make-up, picking out all my own clothes, and dressing myself.  I just have to allow for ample time when planning to go anywhere.


I also have two paid drivers that come three days a week and transport me to run errands, make appointments, or offer companionship if we want to go shopping or out to lunch.  I enjoy several days a week with friends who sign up to take me to lunch or shopping dates or girl time around town!


The doctors have always asked me about my sleep patterns and until recently I have been sleeping great.  They said that when my sleep patterns get interrupted, then the disease will be progressing aggressively.  Last night I had a horrible night’s sleep.  I had tons of anxiety and I could not get my brain to let down.  This worries me and I’m really concerned.


-What have you seen as the biggest changes in the last 12 months?

Bev: There is no cure for this disease.  We can only treat the symptoms.  So that means that my medication has increased because my symptoms are changing and progressively getting worse.  My balance has seen the most decline, so I’m falling more often and I fell again just this morning, actually.


I tend to have the most trouble coming down the stairs.  In late 2015 I had a horrible fall where I was going too fast and I missed several steps in our back hall and flew into the kitchen island, hitting my head on the granite counter.  I had several stitches in my head from that fall, and on a day-to-day basis, I’m usually covered with quite a few bruises and Band-Aids!


-How is your mindset?  You know what’s coming.  How do you cope with this?

Bev: I worry everyday about leaving my children and battling anxiety is my greatest hurdle.  I know I will not get to see them grow up and I will not be here for them when they need me as they get older.   I know what’s coming, the dementia and mental changes.  Early on I went through all the emotions: anger, depression, and anxiety.  I grieved the loss of the future and many days I spent my whole day in solitude, frozen by what was to come.


Then one day I decided to start living.  Once I decided to open up about my disease, I no longer had to hide it and bear this burden alone.  I tell my friends that I’m going to put HD on the shelf today because I’ve got a life to live!   I don’t want to miss any moment with my family or friends because of this horrible disease.  This disease does not define me and I’m choosing to make the most of each day that I still have!


Interviewers’ Notes: 

The smile on Bev’s face and the joy she has from knowing that this IS her life and she is going to make the most of it is a blessing we received that day.  HD is a part of her life, but it is NOT her life.  She loves her family, her friends, and she lives each day as each one of us should….to the fullest.

Today is a gift and tomorrow is no guarantee!


From the Hartig Family-

We can’t thank you enough for your ongoing generosity and support.  We knew at the time of the diagnosis 17 years ago in 1999 that we wanted to bring purpose to all this pain.  As a team, we CAN and WILL find a cure to end this aggressive disease for generations to come.  Thank you, Team Hartig!


In Hope to cure HD,


The Hartig Family



Keep in touch with updates, pictures, and ongoing info about HD on our website and FB page:


Facebook: fb.com/TheBevHartigHuntingtonsDiseaseFoundation


Website: bevhartighuntingsdisease.com


Interview by Mindy Irish and Pam Barr