From historic mansions to waterfront views, this Rhode Island race had everything including the most scenic and stunning coastal views of any half marathon I have ever run.
State #28 did not disappoint. The race was extremely well organized and the people were incredibly friendly!
From dusk until dawn, this challenging high-elevation trail run will test even the most even the most seasoned runners
An Average Person Doing Extraordinary Things
Run4Papa is back and better than ever! I have been working diligently behind the scenes with Northwestern University to provide PPA patients and their families with an unprecedented opportunity.
Our Goal: Fund the 1st National PPA speech therapy trial in history.
For the first time, we can deliver this gift to families battling dementia nationwide.
I NEED YOUR HELP!
- Today is different from every other day.
- Make a choice.
- Choose to make a difference.
- Be part of the solution at www.Run4Papa.com
Stop Wishing. Start Doing.
Running the Strip at Night!
What is your favorite color?
One Voice: Caring for EVERYONE with PPA
The 2012 CNADC PPA Caregiver Conference was an important day for those of us with loved one’s battling PPA. We had the sharpest minds in the field educating us on how to help those we love the most. As the morning kicked off, my vending booth was prominently located and positioned side-by-side CNADC’s to help promote the Run4Papa campaign. My booth had 3 main exhibits: 1. A personal letter of endorsement from Dr. Marsel Mesulam 2. A computer with Run4Papa.com pulled up for attendees to view and learn more about THE CAUSE 3. The newly launched Running Shirt – an opportunity for EVERYONE battling PPA to have their loved one’s name on the back of my shirt for the Great Wall of China Marathon – a BIG HIT!
The conference exposure was heart-warming because I had the pleasure of meeting caregivers whose loved one’s were diagnosed with PPA. While there were plenty of new names and faces, there were plenty of people attending that were following THE CAUSE online through social media like Facebook and Twitter. On top of all that, the most emotional conversations (if I am allowed to be biased) took place when speaking with patients battling PPA, all of whom were enthusiastically encouraging the efforts of the Run4Papa campaign.
With 324 attendees, the conference was tailored to family caregivers as well as health care professionals. Dr. Marsel Mesulam, Director of the CNADC and the man who first identified PPA, graciously welcomed everyone to the conference. Following his introduction, a lecture on the state of PPA research and treatment by Northwestern physician and assistant professor of geriatrics was delivered by Dr. Diana Kerwin. Our keynote address on “Behaviors, Language and Communication” was presented by Dr. Geri Hall (from Banner Alzheimer’s Institute in Phoenix), who has lectured and published widely on behavioral interventions and communication strategies in dementia, specifically PPA. The morning session ended with an interactive Q & A session from a panel of doctors and PPA caregivers. This opportunity provided audience members the ability to ask questions ranging from medical opinions, to family member reactions about PPA as well as expectations down the line for caregivers. When all the questions had been asked and answered, we broke for lunch and gave attendees more time to mingle amongst the vendors at the conference.
During the afternoon, the CNADC team organized 12 different breakout sessions for members to attend. Here were some of the choices:
a) Newly Diagnosed, Now What? b) Understanding Genetics in PPA c) Responding to Behavior and Personality Changes in PPA d) When is it Time? Identifying Options and Making Transitions for Care.
My parents split the meetings above while I attended the Support for Family Caregivers and Exploring Creative Art Therapies sessions. The caregiver session was unbelievably emotional because everyone shared their unique personal story. In the same respect, it was extremely helpful listening to everyone and learning how each person/family copes and adjusts to an ever-changing lifestyle of caregiving. Even though this was my first caregiver group experience, I could see the instant impact our dialogue was having on the faces around the table. One caregiver whose wife was diagnosed with PPA within the past couple years said, “I didn’t think I needed to come here before, because to be frank, I was in denial about my wife. This year, I realized that was a mistake. I will continue to come every year moving forward and attend the support groups for help and advice in the future.”
Similarly, the creative art therapy session was equally informative yet surprisingly entertaining. Through hands-on classroom activities, we learned how art, music and movement therapy help people diagnosed with PPA by maintaining their sensory and motor skills. The behaviors included expressing our inner thoughts by drawing pictures on paper, using hand gestures to communicate our emotions, and singing along to improvised songs instructing us to repeat specific lyrics.
As the breakout sessions finished, everyone headed back to the lecture hall for the conclusion of the conference. My What would you do for THE CAUSE? video was being shown and looped for roughly 15 mins on the big screen as everyone took their seats. Dr. Jennifer Medina concluded the day with her speech on “Stress and Caregiving: Mindfulness as a Coping Tool.”
I was so proud to share this day with my parents, family caregivers, patients, experts in the field-and of course-the CNADC team. The conference is an excellent resource for families and people fighting against PPA who want to be a part of a special team dedicated to finding treatment and a cure for this brutal disease.
If you couldn’t make it this year for whatever the reasons, please don’t miss it 364 days from now.
Want your loved one’s name on my running shirt?
Here is your chance to make a contribution and have your loved one’s name placed on the back of my running shirt in honor of their battle against PPA during the Great Wall of China Marathon in 2012.
For special dedication, go to: PPA Research and Education Fund – Run4papa
- Please reference “Running Shirt Campaign” in comments section – bottom of page 2 on donation site.
Thank you for your support!
An Average Person Doing Extraordinary Things
Thorne Auditorium, Rubloff Building
375 E. Chicago Avenue, Chicago, IL 60611
Come out this weekend and help Support the Journey to raise awareness for all those battling PPA everyday!
Click on Event Itinerary
Jason Boschan has partnered with the CNADC to raise funds in support of primary progressive aphasia (PPA) research. Jason’s grandfather, Dr. Louis “Papa” Heyman, a pediatrician for 50+ years, was diagnosed with PPA, a dementia that makes a person progressively lose the ability to communicate and comprehend language, in 2009.
Jason is running the Great Wall of China Marathon in May 2012 to honor his grandfather and EVERYONE battling PPA. The marathon is very exclusive and includes steep inclines that total over 5,000 steps. It is the equivalent of running up and down the Hancock Building & Willis Tower, and then taking a round trip between the Chicago and Evanston campuses of Northwestern University.
Jason has trained and run races in 9 states to prepare for the Great Wall of China Marathon. This campaign has helped bring awareness to PPA research and there have been over 360 individuals who have donated to the cause.