As written for the 9th annual BHHDF event invitation for April 29, 2018:
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!
Huntington’s Disease has been in Bev’s family for the past 19 years, when she learned of her biological father’s then battle with the disease. Soon after, in 1999, Bev was tested and learned of her positive results with HD.
Currently, the disease is progressing in Bev’s life. She can no longer drive and needs assistance from drivers and caretakers through many parts of the day. She is still very independent for self-care tasks, but it takes her a very long time to get ready and to start her day.
Some changes in the disease from the last 12 months include more challenges with word pronunciation and articulation. At times it can be hard to understand what Bev is saying, as it relates to an increased loss of control and communication between the nerves and muscles all over the body, including the tongue.
This also has an impact on Bev’s ability to chew and swallow foods. She needs her food cut or blended into very small pieces, so some of her daily regulars and easy-to-chew items include smoothies, cereal and pie. She reports that she eats pie every day….pumpkin or apple are her favorites!
To see Bev, her movements, called “chorea”, are continually progressing. She cannot stand or sit still and her arms may uncontrollably move quickly across or above her body. This has an impact on her balance and gait and her risk of falling is an ongoing concern.
Due to all the moving and imbalance, it’s not uncommon for people to approach her and ask if she is intoxicated, as was the case at a recent school choir concert. Bev’s hope is that people will have more compassion, less judgment, and an open mind to others who may be battling slow, silent diseases like hers.
Bev reports that HD is most trying emotionally as well. As she wakes up daily, her very first thought is the reminder that HD is eternally present. It’s not going anywhere and this is going to be a hard day. And the days will get harder as time passes.
Bev’s main priority is to be up early with her children as they start their day. She wants to be present and in every part of their lives while she still can. However, her biggest challenges beyond the physical aspects are having to step back from her roles as a mother and allow other people to step in to assist the family.
On the other hand, she will say that her greatest blessing to this point to assist her with dealing with HD is her ability to openly talk about her challenges and limitations. She no longer wanted to put HD “on a shelf” and worry about it someday. She decided to confront all aspects of it head on and living this out loud is helping her as she progresses along this journey.
Bev’s ultimate hope is that she will be part of science and research finding a cure for HD in her lifetime. Now in our ninth year of the “Bev Hartig Huntington’s Disease Foundation”, we have successfully raised over $1.4 million and funded eight research programs.
With your support, we will continue to educate, fund and believe. Thanks to you, Team Bev, for your ongoing support and generosity!
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:
Writers: Mindy Irish and Pam Barr
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!
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:
Interview by Mindy Irish and Pam Barr
The Bev Hartig Huntington’s Disease Foundation 6th Annual Fundraiser
on April 25, 2015 was a HUGE success! View and purchase the photographer’s pictures HERE!
The research to cure HD is well underway!
You can watch this excellent video update on this link on YouTube HERE
about the research group that is making progress using the funds generated from the BHHDF team efforts!
Bev in her gorgeous dress and smile!
Bob and Bev as they welcome their guests and give an update on the Foundation.
This is the update that is included in Bev’s invitation to her annual event
Greetings Friends and Family!
We are so excited to see you again soon at our sixth annual fundraiser
event! We would like to provide you with an update on how HD affects our
lives. My intention and hope is that by making my daily life real and by
shedding light on the magnitude of this disease, that you may support our
family throughout the year and help spread awareness about the presence of
Huntington’s Disease in our community.
I see my neurologist twice a year and each time she adjusts my medication.
What is prescribed helps me manage depression, mood swings, anxiety, and
some of my movement control, but even the fine motor task of closing a
Ziploc bag is something I can no longer do. My handwriting has gotten a lot
worse, but I can still use the computer (and have no problem doing online
One of my most frustrating life moments was that in the summer of 2013 my
ability to drive ended. I truly dislike having to rely on other people to function,
but I’ve realized it is just what I have to do. I am fortunate enough to have
several groups of people to walk alongside us in this season of our lives.
With Bob’s travel schedule and my changing condition, I need reliable help to
run our household and assist us in taking care of the children. So I have six
regular people who come into our home on a set schedule and I like to call
them “Team Hartig!” I also have a second group of people that help me as
drivers and companions on a daily and weekly basis to enable me to live life
With their help, I’m still able to get out of the home about three days a week
to grocery shop, run errands, attend the kids’ events at school and play
tennis with my friends. Although sometimes I fall or miss the ball, playing
tennis on a weekly basis has given my body the physical activity it needs and
my mind the mental challenge and social interaction it desires. As a family
we are also planning on participating in the 2015 Geist 5K, too! Bob will
push Katie in the stroller, I will run/walk and Ryan will lead the way. This
disease may be progressing, but I’m working with all I’ve got to stay ahead of
it each day!
When I do prepare to leave the home I need about two hours to undertake
the process of getting ready, putting on my make-up, and doing my hair. My
motor skills have degenerated and it just takes me additional time to do the
simple tasks that we are all used to doing. While my gait is unsteady and my
arms sometimes have a mind of their own, I’m fortunate that I don’t fall that
often and have not sustained many injuries. The doctors tell me that those
with HD usually die due to a choking or falling incident, and I’ll be honest and
tell you I do fear that. My biological father had HD and he died after
receiving a head injury from a fall. I’m grateful that my episodes and injuries
so far are minimal and I am truly making the most of the gift of today!
My energy and mental clarity are progressively changing with this disease.
I’ve found that a morning and afternoon nap helps me to recharge and be the
best I can be mentally and physically later in the day for Bob and the kids.
I’m Bev, Wife and Mom and ultimately that is what is most important to me!
My main message to you is that this disease is devastating and I’m truly
shocked that in 2015 we have no proactive treatment and absolutely no
cure. We are simply treating the symptoms and that needs to change. I am,
however, honored to report that as a team all of you helped us raise over
$150,000 in 2014 that went directly to HD research! In November we
partnered with Oregon Health Science University (OHSU), specifically Dr.
Jodi McBride at Oregon National Primate Research Center, and their efforts
are well underway to work towards finding a cure. Additionally, our
foundation is bringing awareness and education to the effects of HD!
Our family can’t thank you enough for your ongoing generosity and support.
I knew at the time of my diagnosis 16 years ago in 1999 that I 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!
In Hope to cure HD,
Bev for the Hartig Family
PS: Please make sure to like and select to “get notifications” from my
Facebook page for ongoing weekly updates into our research progress and
tidbits about our family throughout the year!
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 email@example.com
The fifth annual Bev Hartig Huntington’s Disease Foundation fundraising event on April 26, 2014 was another success! There were over 165 people in attendance and the funds donated are well over $100,000, with a final official number still in count. As I got to speak to Bev on this year’s event roughly one week later, this is her feedback on how it all went and some fun-to-know behind-the-scenes info that is very interesting! Thanks Bev for the interview!
What was your feedback on this year’s event?
Bev: This was the best one yet! It was a fabulous theme and most everyone dressed up in country, hoe down gear.
What stood out most to you about the event?
Bev: I loved seeing all the people from all seasons of my life. This year four college friends were able to attend and this was their first year that they could attend all together. They came in from Texas, Minnesota, Chicago and Southern Illinois. It really meant a lot to me that this group of gals had made an effort to support me together this year.
What did not go as planned or what was different than you expected?
Bev: I loved seeing all the people dancing, but the country line dancing looked really hard. Maybe we needed more entry-level instruction. It seemed hard to follow, but looked like people were enjoying it!
What’s one thing we don’t know about the night?
Tell us about what you do the day of the event to prepare for the night. What is the scoop?
Bev: I shopped earlier in the year for a few dresses and even traveled to Chicago with a friend to buy a dress. I ended up wearing a turquoise one that I found here in town at Von Mar and just loved it! I got my first-ever spray tan and that was quite an experience in itself! I do my own make up, but I did go to my hair stylist to have my hair curled. I also went the day before to get my nails done. My team was there setting up all day and I arrived around 6:20PM ready for the night! I stayed until 1PM and by the time I got home, I was wiped out. This was such an amazing night, but does take a lot of my energy.
You spoke on the mic in the middle of the event. Did you have a plan for that and were you nervous?
Bev: I was very nervous about speaking, but I knew it was something I wanted to do. I made sure to have a poem prepared to end my talk and I wanted to call my committee up and thank them for their efforts. I want to speak at the events for as long as I can to share where I am in my journey and thank my guests for coming.
What are a few staple items and events that you think we should keep each year?
Bev: That photo booth was just WAY too much fun! People loved that and I want that to stay. We also need to find another awesome theme like we did this year. I really enjoyed seeing the guests get into the theme and dress up. That was very special to me and really made the night. Overall, the entire evening brings me joy. Seeing people from all parts of my life come together to support this cause is so fulfilling. I feel so very loved!
So the event is over. The guests go home. What happens next?
Bev: The next morning at around 8:30AM, we have family that is in from out of town come to our home for a traditional gathering where we serve egg kiche, coffee and breakfast goodies and just enjoy the moment. The kids are here and it’s a highlight for them to spend time with both sides of the family and anyone who has come in from out of town. It is so enjoyable and our guests stay until about 1PM…and then we crash! Afternoon naps are certainly in order!
Bev: We gather with my team as a group and I write thank you notes to each of them and offer a gift as a token of my appreciation for their time and efforts invested. Each one has a role and brings their gifts and talents to my cause in such unique ways. I’m so grateful and blessed to have this team! We’ll meet again soon to start planning for next year’s event and we continue to manage the incoming donations and paperwork that goes along with it all.
Tell us one thing we don’t know about the weekend.
Bev: Bob’s sister was in town and all of our guest beds were full, so she slept in my bed with me and Bob needed somewhere to sleep. The only bed left was the top bunk in Ryan’s room! Bob is a trooper and crawled up there for a good night’s sleep….except he reports that mattress is not the best in town! Thanks Bob for taking one for the team!
Thank you Bev for the interview on this year’s event. We know this cause is part of your story and all of us that have attended, helped, donated and invested time are so honored to be a part of this. It strikes me most that the efforts and funds raised now are truly going to impact generations to come. No effort is too small and goes without notice. We may never personally see the results, but the cumulative effect will make a tremendous impact on the lives of others someday, exactly the why that Bev intended this Foundation to be. Go Team Bev!
View all of the photographer’s pictures from the event on her Facebook page HERE! Thank you Photographer Donna Rogula!
Stay tuned every couple of weeks 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 firstname.lastname@example.org