FACTS N' FACTORS NEWSLETTER
SEPTEMBER IS NATIONAL PREPAREDNESS MONTH
September is National Preparedness Month. During the last few months, we have witnessed Americans experience wildfires, hurricanes, flash floods and more. If a disaster strikes your community, are you prepared?
Since 2004, National Preparedness Month is observed each September in the United States of America. Sponsored by the
Federal Emergency Management Agency (FEMA)
National Preparedness Month encourages Americans to take steps to prepare for emergencies in their homes, businesses, schools, and communities.
FEMA's Ready Campaign
, a public education outreach campaign, has great information and resources to help the general public prepare for and respond to emergencies. As we all know this preparation is especially important for persons with chronic health conditions, so be informed and make a plan -
go here to find a comprehensive checklist from the Ready Campaign
Persons with an inherited bleeding disorder and their caregivers need to be proactive in order to be ready for all sorts of circumstances.
The Hemophilia Federation of America (HFA) and the National Hemophilia Foundation (NHF) have many tools and resources that are intended to help the bleeding disorders community plan ahead:
VHF IS HIRING!
We are still looking for the right person to join our team. Please share with anyone that you think may be interested.
We are hiring a Development Manager and the position will focus on increasing revenue through several events, as well as focus on the prospecting, cultivation, and retention of individual and corporate donors and the mobilization and management of the Virginia Hemophilia Foundation's (VHF) volunteers.
To apply, please email a cover letter, resume, salary history, and three references to the attention of Kelly Waters, Executive Director -
No phone calls or hard copy submissions will be accepted. Applications will be reviewed until the position is filled.
Competitive salary commensurate with experience. Benefits include health insurance and retirement contributions.
Saturday, October 28, 2017 | 9:00 am
Robious Landing Park | Midlothian, VA
Join us for a race the entire family can enjoy!
The VHF Trick or Trot is a fun and healthy way to show your support for all those whose lives are impacted by bleeding disorders.
Run a 5K course, walk a quick one mile route, or cheer on the kids as they compete in the Monster Dash, a 100 yard fun run for ages 12 and under. Costumes are highly encouraged and you won't want to miss the pre-race Halloween party with a DJ, food, and more!
Sign up today and start fundraising!
Funds raised will go toward fulfilling VHF's mission of supporting the needs of those impacted by a bleeding disorder through education, advocacy, and community.
Junior 5K | $15
Fun Walk | $10
Don't miss out on the Trick or Trot 5K Groupon running until 10/28/17 - one adult 5K entry for $15 (that's 50% off!) Go Here to Learn More.
- 23rd - 24th - Family Retreat Weekend at Great Wolf Lodge in Williamsburg. Registration is now closed.
- 27th - Women's Night Out Carytown Food Tour in Richmond. Event is now full - email email@example.com to be added to the wait-list.
* 6th - 8th -
Teen Retreat at Camp Holiday Trails in Charlottesville.
GO HERE TO RSVP.
* 12th - Educational Dinner in Williamsburg.
RSVP COMING SOON.
* 14th -
Celebrate Fall Community Event at Back Home on the Farm in Harrisonburg.
GO HERE TO RSVP.
TEEN WEEKEND IN VIRGINIA BEACH ON AUGUST 5TH - 6TH
Teens from across the state gathered in Virginia Beach on August 5th - 6th for a weekend filled with
advocacy, education, community building and summer fun with other teens who are faced with similar challenges.
On Saturday morning Chelsea Frimpong, NHF Education Specialist and Dulce Sierra and Matthew Gates, both from the
NHF NYLI program
, presented two Steps for Living Workshops. The first one titled
"Do You Bleed Like Me"
gave the teens a chance to test their knowledge... on each other! And the second
"Becoming Independent on My Own"
gave them a chance to discuss disclosure, finances and general concerns about growing up
To round out the day Taalib Smith, a certified personal trainer, led a high-energy HFA Fit Factor session called
"Exercise, Fitness, and Nutrition for Teens - Do's/Don'ts of Teen Fitness Programs".
That evening, at the Virginia Beach Resort Hotel, in a room with a beautiful view of the bay we came together for an educational dinner program on
"Transitioning from Pediatrics to Adult HTC's
". The presentation was given by
Martina Willis-McCulllough, Clinical Nurse Educator.
Thank you to Octapharma for sponsoring this informative dinner meeting.
Thank you to our "Teen Weekend" sponsors Hemophilia Federation of America, National Hemophilia Foundation, Novo Nordisk, Octapharma, Pfizer and Shire.
CELEBRATE SUMMER COMMUNITY EVENT AT OCEAN BREEZE ON AUGUST 6TH
It was a great, sunny and warm Sunday on August 6th as over 100 VHF members joined together to celebrate summer at one of our favorite locations - Ocean Breeze Water Park!
The day began with a picnic lunch under the pavilion and then a fun informal presentation on staying healthy and active with a bleeding disorder by Zack Bordone. After lunch our members had the rest of the day to enjoy all that Ocean Breeze had to offer.
Thanks to our sponsors DrugCo Health, Novo Nordisk, and Shire for our community day of fun in the sun!
EDUCATIONAL DINNER IN ROANOKE ON AUGUST 10TH
To Treat or Not To Treat? That is the question! This educational dinner program in Roanoke on the evening of August 10th focused on approved and unapproved activities for those living with a bleeding disorder.
The speaker, Martina Willis-McCullough, BSN, Nurse Educator, enabled attendees to leave with the tools and strategies needed to recognize an active bleed in a child or adult and determine what treatment is needed.
Thank you to Octapharma for sponsoring this dinner program.
BACK TO SCHOOL EVENT AT GO APE IN WILLIAMSBURG ON AUGUST 19TH
Russel and Max Kaiser | VHF Members
On Saturday August 19th we had a great day at Go Ape Zip-line & Treetop Adventure. The day started off with an instruction session on safety rules, how to use our harness and safety lines in order to keep from falling from great heights. Once we were set loose on the course we were faced with obstacles to overcome, such as Tarzan swings, hanging cargo nets, floating walkways and bridges that moved, all 25-45 feet about the ground. Each of the different sections of the course presented different levels of difficulty and each section of the course ended with a super fun zip line, which one of us needed more practice with in order to land on our feet and not our back side. The adventure course was a real thrill. We learned to overcome fears and doubt and we learned that when you persevere you can conquer your fears and accomplish great things. Once we finished the adventure course, we were treated to a wonderful lunch from a Williamsburg favorite, Pierce's Barbecue and during lunch we went over back-to-school resources and spent some time with old and new friends.
Thank you to our sponsors HPC Specialty Pharmacy, Novo Nordisk and Shire.
NATIONAL HEMOPHILIA FOUNDATION ANNUAL MEETING IN CHICAGO AUGUST 24TH - 26TH
Sabrina Adams | VHF Member
My husband and I were granted a
VHF Educational Scholarship
to attend the National Hemophilia Foundation's (NHF) Annual Meeting in Chicago. The meeting was very informative because of all the different educational tracks that were offered. There was a topic for everyone. There was so much going on that at times it was sensory overload. Many of the vendors had some great giveaways such as personalized shirts and jerseys. We enjoyed meeting people from all over the country. The city of Chicago was fantastic! The weather was perfect so I spent as much time as I could in-between events exploring the city on foot. I also made sure that I tried some Chicago favorites such as deep dish pizza, Garrett's popcorn, and a Chicago style hot dog. I even went for a swim in Lake Michigan. The coolest part of the weekend was that NHF reserved the entire Field Museum for the last night of the annual meeting. I could have spent a whole day in there. I highly recommend for anyone who has not been to an annual meeting (this was the first for my husband and I), to definitely go. It's an amazing trip.
2017 COMMONWEALTH OF VIRGINIA CAMPAIGN (CVC)
VHF has been approved to participate in the 2017 Commonwealth of Virginia Campaign (CVC). The campaign will kick off on October 18th and run through December 21st.
If you are a Virginia state employee and you wish to direct your giving to Virginia Hemophilia Foundation (VHF) our
CVC code is: 06043.
CHES LADYBUGS PROGRAM
For Women Affected by a Bleeding Disorder...
Friday, November 3 - Sunday, November 5th at the Marriott at City Center in Newport News
Comprehensive Health Education Services (CHES)
LadyBugs program empowers women ages 16 and older who are affected by, care for someone, or carry a bleeding disorder. The program's goal is to assist women to find their voice when it comes to decision making about the health of themselves and their loved ones.
The goal is to provide education about medical developments, advocacy skill building, stress management techniques and more to encourage women to recognize that their health is equally important.
Like most CHES programs, LadyBugs is free for participants, including travel. But budgeting is limited, so act fast!
HFA EDUCATIONAL WEBINARS
Wednesday, September 13th 8:00 pm
To Play or Not to Play? That is the Question!
There is so much conflicting information about whether a child with a bleeding disorder should play sports. Hear from HFA resident experts - those with bleeding disorders and parents who made the choice to allow their child to participate in sports. The panelists will share their experiences and provide useful insight on preparing for sports. Go Here to Register.
Wednesday, September 20th 8:00 pm
PRIDE Project: How do I Participate in Research as a Community Member?
This webinar is the second of a six-part webinar series for HFA's Patient-centered Research for Innovation, Development, and Education (PRIDE) Project. The PRIDE Project's goal is to train stakeholders in the bleeding disorders on the importance of patient-centered outcome research.
In this webinar, Julie Kennedy Lesch, MPA from the Patient-Centered Outcomes Research Institute (PCORI) will address the importance of patients and caregivers' roles in patient-centered outcome research and discuss how patients and caregivers can participate in research opportunities. This webinar will be moderated by Ann-Grete Tan, a bleeding disorders community member with a 16 year old son with severe hemophilia A and interest in effective research impacting the bleeding disorders community.
Go Here to Register.
October 20-22, 2017 in Cambridge, Massachussetts
CSL Behring and The National Hemophilia Foundation are partnering with MIT Hacking Medicine to bring together members of the hemophilia community, developers, designers, engineers, clinicians, and others. They will meet in Cambridge to hack hemophilia-related questions during this weekend-long event. Bring your expertise, pitch a problem, identify a solution, and help change lives.