 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
|
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
Facts N' Factors Newsletter| April 2016
|
On April 17 the World Federation of Hemophilia (WFH) will join the global bleeding disorders community in marking
World Hemophilia Day. This year the WFH is focused on bringing attention to a challenge that too many people in the bleeding disorder community face: lack of access to treatment and care.
On World Hemophilia Day the highlight is the need for treatment for all people with a bleeding disorder and how this goal will only be obtained with the help of the community at large.
There is a huge gap in the level of care available to patients with a bleeding disorder around the world. Some do have medical care, but without the correct care many patients still suffer debilitating pain, permanent joint damage, or death.
The WFH has worked tirelessly for more than 50 years toward the shared vision of Treatment for All, but the support of the entire community is much needed. Go Here to learn more.
|
Bleeding Disorders Awareness Month Wrap-up
From the National Hemophilia Foundation Facebook Page: "We cannot thank all of you enough, but we thought 65 million was a good start! Between the combined platforms of NHF and the bleeding disorders community, we reached an audience of over 65 MILLION with the
Red Tie Challenge during Bleeding Disorders Awareness Month. We are thrilled that you made this movement such a great success! Let's keep the Red Tie Challenge alive through
World Federation of Hemophilia World Congress in Orlando in July. This kind of support can make a difference around the world. Stay tuned for more information next week!"
From the Hemophilia Federation of America Facebook Page: "March 31st fact: To recognize March as Bleeding Disorders Awareness Month, we posted a fact each day on social media to help educate about hemophilia and other bleeding disorders. Thank you to all in the community who updated their Facebook profile picture and cover image, shared our daily facts, passed out our educational fact cards, and held fundraisers. By doing so, you've helped over 800,000 people see something related to bleeding disorders on social media this month! This response is simply incredible!"
How VHF members raised awareness:
VHF members at the Chesapeake Bowling for Bleeding Disorders Fundraiser in March took time out from this fun event to show how they do the Red Tie Challenge!
VHF member Bethany Hunter has a son and a brother with severe Hemophilia A. Her awareness campaign started small this year as she reached out to her colleagues and students at Appomattox County High School. Instead of taking the
Red Tie Challenge, teachers wore "blood drop" ribbons to show their support for those with bleeding disorders. Bethany also shared daily "Fun Facts about Hemophilia" with her students, many of whom knew nothing about Hemophilia. Next year, Bethany plans to expand her campaign by selling the ribbons to raise funds for Camp Youngblood.
The 4th and 5th grade at Good Shepherd Episcopal School in Richmond took the Red Tie Challenge after Elsa gave a presentation about her trip to Washington D.C. for NHF Washington Days.
|
Sunday, April 24th, 3:00 pm at The Valentine
Come Make History With Us...
Flavorful wines expertly paired with hors d'oeuvres by Mosaic Catering. Hemophilia history display, tour The Valentine Museum, live music by Church Hill Music Co. and you will not want to miss our popular raffle and silent auction. All this in an elegant, but relaxed setting in Downtown Richmond.
Some of our most popular raffle and silent auction items include:
* Family Weekend in Williamsburg with a 2 night stay at Great Wolf Lodge
* One week stay in the Outer Banks
* Virginia Beach Weekend Get-away
* Spa Day
* Romantic Weekend for two in Richmond
And so much more...
|
April and May Upcoming Events
April 17 - Blood Brotherhood/Dads In Action Event *EVENT IS CANCELLED*
|
VHF Programs at Camp Holiday Trails
|
|
|
We Asked Soren - Why Do You Attend VHF Programs at Camp Holiday Trails?
|
Application Deadline: April 14th
Application Deadline: April 30th
Application Deadline: April 30th
|
U.S. FDA Approves CSL Behring's IDELVION® --
The First and Only Hemophilia B Therapy with Up to 14-day Dosing Intervals
KING OF PRUSSIA, Pa. - 04 March 2016
- In clinical trials, IDELVION maintained factor IX activity levels above 5 percent over 14 days, resulting in a median annualized spontaneous bleeding rate (AsBR) of 0.00
- IDELVION, CSL Behring's long-acting recombinant albumin fusion protein, delivers on the company's promise to develop and provide innovative specialty biotherapies that help people with serious medical conditions live full lives
|
2016 Bowling For Bleeding Disorders Fundraiser - Best Year Yet!
Zack Bordone and LeAnn Johnson | VHF Members
Each year during March we celebrate Bleeding Disorders Awareness Month, and the best way to celebrate and advocate for bleeding disorders is by involving our community. Bowling for Bleeding Disorders provides us with an excellent opportunity to involve our community by giving us the ability to raise money and awareness all while enjoying a fun time.
Many people outside of the bleeding disorders community have little education on bleeding disorders. Having an event like Bowling for Bleeding Disorders helps bring in and educate outsiders on the challenges we face. We can convince people to join us for a fun afternoon of bowling and then share our stories and raise awareness while they are there. Many wanted to know "Why should I donate?" or "Who receives the money?" Education is a great way of advocating for bleeding disorders.
The proceeds from this event directly support Camp Youngblood at Camp Holiday Trails, where kids enjoy a week of fun and learning with other kids that are faced with similar challenges. This year's fundraiser on Saturday, March 5th was the best year yet! We topped the amount of bowlers who joined (230 people in 2 locations), which means we also spread the word to more people. We also raised the most money compared to other years (almost $45,000), which means we helped send more children to camp. Bowling for Bleeding Disorders Fundraiser is a huge success for VHF and our entire community.
|
Educational Dinner in Roanoke
Davida Wickline | VHF Member
We had an awesome turnout for our educational dinner in Roanoke, VA on March 9th!
Our Hello Talk was titled "No Sweat - Staying Active and Healthy with a Bleeding Condition"
and it was all about how having an active lifestyle can help families affected by bleeding disorders. Staying active can decrease stress on joints and frequency of bleeds as well as build healthy bones, muscles, and joints. Regular activity can decrease weight and also the risk of developing physical ailments including heart disease, hypertension, and strokes. Exercise can have emotional benefits too such as decreasing depression and anxiety all while building self esteem and self confidence.
The amount of activity recommended for adults is at least 30 minutes a day with muscle strengthening activity 2 days per week. For ages 4 -19 it is recommended to have 30 minutes of activity a day with 3 days a week of muscle strengthening. When starting new activities start slow with ones that are fun, safe, and simple. Watch for bleeds and always check with your Hemophilia treatment Center (HTC) for guidelines and recommendations. Thank you to our educational dinner sponsor Baxalta.
Go here to register for the next Educational Dinner in Roanoke on May 5th!
|
Community Event at Topgolf
Beth Smith | VHF Member
Once again VHF did an amazing job coordinating the community event at Topgolf on Sunday, March 20th in Virginia Beach. Also VHF, in collaboration with sponsors CSL Behring and HPC Specialty Pharmacy, took the time to put together a fun trivia game for us to play with the lure of chocolate as our incentive to choose the harder questions within each category. Children and adults alike participated in the game which asked questions in the categories of hemophilia, von willebrand disease, and treatment. We were allowed to answer on our own, use our table mates as resources or "phone a friend" outside our table. It was impressive to see how much we knew, and to learn even more about the collective areas that impact our lives.
After filling our bellies with delicious sandwiches, drinks and chips, we were off to the golf bays where we got a special treat of working with one of the golf pros to improve our swings (or save ourselves and others from imminent injury) and he was a true joy!
Young and old alike were having a wonderful time when we received yet another special treat! Hot cinnamon sugar doughnut holes with tubes filled with yummy fillings arrived for our enjoyment.
This was one of my favorite events thus far! It's always so nice to connect with those we know and meet others we've not seen before. Thank you, all, so much for all the energy and love you put into us! We are so blessed to have you all in our lives!
Go here for more event photos.
|
VHF/HACA Advocacy Consultant Report
Becky Bowers-Lanier | VHF and HACA Advocacy Consultant
The Virginia General Assembly adjourned sine die one day earlier than expected on Friday, March 12th. At times the politics got in the way of governing, and you probably have read about the Virginia Supreme Court Justice flap, the Senate's expelling reporters from the Senate floor (which was reversed), and the absolute refusal of the House and Senate to expand Medicaid, among other things.
In addition to working to close the coverage gap, otherwise known as expanding Medicaid, we had actively worked on specialty-tier anti-discrimination and monitored another set of "drug pricing" bills. Read on for more information.
On our specialty-tier anti-discrimination bill that was carried in the House by Del. Jenn McClellan
(HB 702) and in the Senate by Sen. Rosalyn Dance
(SB 442), we were able to get a letter sent from the Chairman of the Senate Commerce and Labor Committee to the Bureau of Insurance, asking the Bureau to investigate whether drug pricing discrimination is occurring and how the issue has been handled in other states.
|
VCU - HTC Hemophilia Clinic Has A New Home
The new Children's Pavilion opened at VCU on March 21st. The new building features easier parking, outdoor space, redesigned patient rooms, a sibling center, and much more. The VCU hemophilia clinic will be held in the new ASK Pediatric Hematology/Oncology clinic on the SkyLobby level. We look forward to seeing you in the new space!
Go here for more information about the new Children's Pavilion.
Pictured here:
The Farina family were among the first families to be seen in the new pediatric hematology clinic at the VCU Children's Pavilion.
|
The Central Virginia Center for Coagulation Disorders/
|
| |
Community News and Articles
|
Scholarship Season Is Here
|
Meet Our Newest Member
VHF board member Monika Eiden and
 her husband T.J. welcomed Henry Lukas Eiden into the world on March 2, 2016 at 4:29 pm. Henry weighed in at 7lbs 7oz and measured 21 3/4 in. long. We
cannot wait to meet you Henry!
|
Study of 50 Years of Hemophilia Healthcare
Outcomes Yields Surprises
Source: PRNewswire, March 16, 2016
Results from a new study indicate that despite 50 years' worth of advances in the area of comprehensive care for patients with bleeding disorders, males with hemophilia still grapple with significant health-related issues affecting their quality of life. The study, "
Men with Severe Hemophilia in the United States: Birth Cohort Analysis of a Large National Database," was published online on March 16, 2016, in the journal Blood. The lead author of the article was
Paul E. Monahan, MD, of the Gene Therapy Center at the
University of North Carolina at Chapel Hill. Co-investigators included professionals from the hemophilia treatment center (HTC) network and the Centers for Disease Control and Prevention (CDC).
Go here to read more.
|
Summer Events and Programs
|
|
|
|
 |
|
 |
|
 |
 |
 |
 |
 |
 |
 |
 |
 |
|
|
|
