chewing, some mouth clenching, low energy, and an expiratory breathing phase that isn’t as relaxed as it should be. I develop sore back muscles especially if I allow my head to look down too much. Heat usually takes care of this. We started adding Xeomin to my left pectoral muscle in 1/21, and to my jaw muscles in 10/21. I am currently getting 365 units. I am open to a second opinion somewhere else. Who knows what the future may bring? I stopped my larynx Xeomin injections 2/21 since my otolaryngologist in Madison and I thought these were making my swallow worse. I still have a little strained voice with minimal shortness of breath after injections. I did overall lose 30 pounds and worked with a nutritionist. The theory is that contracting muscles are using lots of calories. I have to consume at least 2300-2500 calories a day to keep my weight at 118 on my small 5’1” frame. I did take two online classes
my insurance offered me: coping skills for chronically ill patients and a mindfulness class. I also found a physical therapist with dystonia experience who has been helpful. My lifestyle is more limited than it used to be, but I know if I pace my activity my body will be happier. I have also found I can do some easy kayaking that doesn’t aggravate my muscles, and keeps my head looking more forward, which is a plus. I continue to follow webinars and zooms with BEBRF, and with DMRF, and a local zoom with Essential Tremor/dystonia. I have and continue to learn so much. I thank you all, especially the zoom people who I feel a connection to. It is so nice to talk with people who understand and empathize. A special thanks to Charlene and all you do for us. BEBRF has really been there for info and support. (Including the info when applying for disability-which I was awarded on my first attempt.)
A NEW WAY TO RAISE AWARENESS BY ANGEL ROBERTS Ever since the launch of the new website, BEBRF has been looking into new ways to raise awareness of blepharospasm as well as expand our reach to those who might not know about the Foundation and all the services we provide. There are many different routes one can take to do that, but we decided to take advantage of the Google Ads Grant offered to non-profits. This endeavor proved to be extremely helpful in our mission to spread awareness to more people searching on the internet for help with their blepharospasm. Google allows nonprofits the ability to use a $10,000/month grant to place ads on their search engine. This means that we did not have to spend any of our donations to promote the Foundation or blepharospasm related content. We signed up and within a few days of getting started on creating ads, we discovered that they also offered a free program for non-profits called Non-Profit Marketing Immersion. This program pairs a non-profit with a group of marketing students who will create marketing campaigns on Google Ads as part of their online marketing class. We were paired with an exceptional group of Italian students in Pisa. They were so interested in learning more about the Foundation and blepharospasm that they soaked up any bit of information that we
provided to them. Their enthusiasm and compassion showed in the ad campaigns they created for us because since May 25th, our ads have been seen by over 54,000 people by the end of July. Out of those 54,000, over 3,200 people actually clicked on the ads – a remarkable increase in website traffic. Much to our surprise, the data showed that quite a few of those (who also viewed our website) were a much younger audience than we would have expected. So, what exactly does that mean in regards to raising awareness? We have witnessed a large uptick in new patients discovering us for the first time, and thankful that they now have an outlet of resources to help them. Many have reached out to find doctors, wanting to gather information to learn more about what they are dealing with, signing up for the newsletter, or even just needing to vent about their struggles with someone who understands them. (As a side note, if you are happy with your doctor, we strongly encourage you to drop us an email or call us so we may recommend them to other new patients in your area). Our mission is all about Education, Support, and Research, and with the help of a group of Italian students and the Google Ads Grant, we are now reaching more people who need just that. 11
