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FACTS N' FACTORS | APRIL 2017
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World Hemophilia Day 2017
World Hemophilia Day is April 17th and the
World Federation of Hemophilia (WFH) is pleased to be taking this opportunity to bring attention to the women and girls in our community who live with a bleeding disorder or has someone in their lives who does.
Go
HERE for more information about World Hemophilia Day and a list of activities and educational resources developed to support women and girls in our community. Follow their Facebook page at
www.facebook.com/wfhemophilia for updates on activities and use the hashtag #WHD2017 when sharing your stories and photos in celebration of World Hemophilia Day.
Join us on April 20th as we gather to honor the community in recognition of World Hemophilia Day! Come join us for a night of learning, imagination and inspiration in the World Hemophilia Day Science Lab! We will be hosting a family-friendly activity where you'll take part in hands-on science activities and trivia.
Go HERE to learn more.
Light it Up Red! For World Hemophilia Day
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Spring Fundraiser and Silent Auction
Spring has sprung, so join us Sunday, April 23rd for "Spring on the Avenue" at the
Branch Museum of Architecture and Design. This unique venue is an important historical and cultural landmark and the first museum of its type in the Southeast.
What to expect...
Live music, heavy hors d-oeuvres, a complimentary champagne cocktail & glass of wine or beer, access to the museum garden & exhibits, and our popular basket raffle and silent auction.
Plan your Bids - Silent Auction Packages to Include:
- I love NYC - Airfare (2 round trip passes), Marriott Gift-card, and VIP passes to The Late Show with Stephen Colbert
- Florida Family Get Away - Airfare (2 one-way passes) and 4 Passes to Sea World and Aquatica Orlando
- Weekend at Great Wolf Lodge - Overnight stay with Gift-cards to Huntsman Grille and Ripley's Believe it Or Not!
- DC for a Day - Gas-cards, Passes to the Newseum and Tickets to a Nationals Game
- Weekend Get-aways in Richmond and Virginia Beach and Much Much More!
$40 per person | $75 per couple
Please note that this event is for adults age 21 and over.
Click on the Register Now button to purchase tickets.
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Family Weekend at Camp Holiday Trails
Friday, May 19th - Sunday, May 21st
Every May families from around Virginia, whose lives are impacted by a bleeding disorder, enjoy a weekend of education, support, and traditional camp fun for the whole family. Family Weekend at Camp Holiday Trails is for families affected by inherited bleeding disorders that reside within the Virginia Hemophilia Foundation (VHF) or Hemophilia Association of the Capital Area (HACA) coverage area. This event is held at
Camp Holiday Trails which is a caring community committed to empowering, encouraging and educating Campers with chronic illnesses, their families and healthcare professionals.
Online applications are due April 30th.
There is a $25 registration fee.
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Annual Education Meeting
Saturday, June 24th
Registration and breakfast begin at 7:30 am and the meeting will conclude by 4:30 pm. Overnight accommodations provided on Friday, June 23rd.
Join us for a day of educational programs, networking, and support for individuals and families affected by inherited bleeding disorders!
Highlights Include:
- Talks on Advocacy, Disclosure, Diversity in the Bleeding Disorders Community, Break-out Sessions and more!
- Exhibits by our Generous Sponsors
- Lyman Fisher Scholarship Recognition
- VHF's Updates
- On-site Children and Teen Programming
- On-site Childcare for Those 5 and Under
Be Sure Not to Miss:
Dinner and education just for VHF members and their families on Friday, June 23rd at 6:00 pm at the Wyndham. Hotel accommodations provided Friday, June 23rd.There is no cost to attend.
RSVP by Friday, May 19th
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Camp Youngblood
Sunday, July 23rd - Friday, 28th
Every summer kids and teens from around Virginia, whose lives are impacted by a bleeding disorder, enjoy a week of fun and learning with other kids that are faced with similar challenges and life experiences. Camp Youngblood is for children ages 7 - 17 with inherited bleeding disorders, their siblings, and children of members of the bleeding disorder community that reside within the Virginia Hemophilia Foundation (VHF) or Hemophilia Association of the Capital Area (HACA) coverage area. Camp is held at
Camp Holiday Trails
which is a caring community committed to empowering, encouraging and educating Campers with chronic illnesses, their families and healthcare professionals.
Online applications are due April 30th.
There is a $25 registration fee.
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- 20th - World Hemophilia Day Event come join us for a night of learning, imagination and inspiration in the World Hemophilia Day Science Lab at the Virginia Aquarium and Marine Science Center. Go here to RSVP (Virginia Beach)
May
- 4th - Educational Dinner the topic will be No Sweat: Staying Active and Healthy with a Bleeding Disorder - go here to RSVP (Roanoke)
- 19th - 21st - Family Weekend at Camp Holiday Trails join VHF & HACA at Camp Holiday Trails for a weekend of education, support, and traditional camp fun for the whole family! This weekend is open to families that are impacted by an inherited bleeding disorder. Go here to RSVP (Charlottesville)
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National Hemophilia Foundation's (NHF) Washington Days
Ann Kendall | Committee Chair - Virginia Advocacy Working Group
Becky Bowers-Lanier | HACA & VHF Advocacy Consultant
Our Virginia contingent at NHF's Washington Days numbered 42 - as part of a record-breaking attendance of nearly 500 from across the country. We walked the halls of Congress, speaking with our Representatives, Senators and their aides about three issues related to the American Health Care Act. As outlined by NHF, our three issues were:
- Maintain elimination of lifetime caps and annual limits on essential health benefits (EHB's). Removal of lifetime caps and annual limits matter to our community; prior to the enactment of the Affordable Care Act (ACA) (Obamacare), we were one of the patient communities that regularly hit these limits. We asked that these provisions remain in the American Health Care Act (AHCA).
- Maintain federal requirements for EHB's. The ACA requires insurance plans cover EHB's 10 broad categories of services. EHB's are important to our community because these ensure that plans are comprehensive, providing patient access to critical health services (including prescription medications) while setting maximum amount of out-of-pocket costs.
- Ensure Medicaid eligibility for all individuals meeting poverty level standards. For those states that expanded Medicaid coverage under the ACA, we asked that the proposed AHCA continue to cover those individuals under Medicaid.
As a member of VHF, the atmosphere at this year's gathering was one of strength - in numbers and purpose. While we all hold differing views on many issues, caring for our families and our community unites us. NHF provided us with excellent guidance on the specifics of the proposed ACHA, and how we as community advocates could deliver our message in a meaningful way to our Representatives and Senators first, by starting to ask ourselves how each of these three issues has in the past, or might in the future affect our loved ones. What did a lifetime cap mean to us in the past? What if we do not have access to EHB's? How does Medicaid help our community, with one-third of our members enrolled? This relatability is key to creating greater awareness and an understanding of our issues by our elected officials; with their help, we can work towards broad, thoughtful conversations that continue to bring us together to help each other.
Go HERE to see photos from this event.
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Educational Dinner and Community Event - Richmond
Kathy Mortimer | VHF Board Member
The whistling theme song for the Harlem Globetrotters filled the arena and everyone smiled and cheered the basketball
players running onto the court. The Globetrotters performed trick shots and entertained the crowd during the game. The star players had nicknames like Ant, Spider, and Big Easy. They made some fantastic dunks and a few shots from the "four point" line (half court)! There was also an amazing female Globetrotter named Ace. Even though they played against one of the tallest basketball players in the world, the Globetrotters pulled out a win. Everyone was able to get autographs and take a picture with the team after the victory.
VHF participants came to the game early and were treated to an educational talk and dinner. Dezarae Tate, RN, Nurse Coordinator at UT-HTC, gave an interesting presentation entitled, "How Not to Marry Your Mother." She highlighted the importance of learning the specifics about your hemophilia and treatment. She noted that as you become more independent, your mom may not always be there to answer the doctors' questions or order your factor. She explained that becoming informed about your treatment options can help to empower you to become more independent and become an advocate for yourself. Thank you to Aptevo Therapeutics and DrugCo Health for sponsoring this event!
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Women's Night Out - Norfolk
Brandy Campbell | VHF Member
Women's Night out was a hit once again! This time the event took place at the Culinary Institute of VA in Norfolk where we participated in a "Casual Gourmet" cooking class making pizza from scratch. Our amazing host of the evening was Chef Troy Camacho. He first gave us a witty and entertaining history lesson on how pizza came to be and how it is made in Italy verses how we know pizza in America. We then strapped on our aprons and headed to the kitchen where we were introduced to Chef Troy's incredible team of students, assistants and interns that would help us throughout our pizza making.
We had a great time as Chef Troy taught us how to "Sling Dough" like a pro; some of the ladies after a couple tries caught on and looked like they have been doing it for years. We made 45 lbs. of artisan pizza crusts that any Italian Chef would be proud of. There was an abundant amount of choices for the toppings and we had so much fun coming up with the many different creations for our pizza masterpieces. Then the best part came, we were able to taste them all! Chef Troy's team escorted us back to the restaurant setting area were we had our history lesson and they brought our freshly cooked pizzas in and we were able to enjoy the wonderfully yummy creations. As a gift, we were able to keep our Aprons that we used throughout our pizza making experience.
The evening ended with an interactive presentation titled "Advocating for Yourself as a Woman" led by Corine Koenig, Manager of Education & Training with the National Hemophilia Foundation. This was such a great experience and I can't wait until we all meet again at the next Women's Night Out. I always have a wonderful time and have made good friends with women that understand where many that don't have hemophilia in their life can't relate. I would like to thank Heather and Kelly for being a great Supporter of Our Mission and choosing excellent events like this to bring us ladies together.
If you are a woman that's life is affected by bleeding disorders, please join us at a Women's Night Out event. You will see that you are not alone in this and we are here to support each other. Thank you to our sponsors CSL Behring and National Hemophilia Foundation.
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Educational Dinner - Roanoke
Davida Wickline | VHF Member and Program Committee Member
We had a great turnout for the educational dinner on March 23rd in Roanoke. We discussed "Being Prepared for a Hemophilia Emergency". This presentation was given by Jennifer Harris, RN BSN. She spoke of the first thing in order to be prepared for an emergency situation, is to have a Medic Alert necklace, bracelet or card so that EMS Personnel know of any medical conditions prior to treatment. In hemophilia emergencies 'Factor First' should be the golden rule of treatment. She also suggested that we all know our local ER and hospital policies in regards to factor and treatment. Many families have a 'Go Bag' that includes factor and other emergency necessities. When traveling it is suggested to contact your local HTC so that they can inform you of the closest HTC to your destination in case of emergency situations. A travel letter from your physician is always a good idea. Lastly we discussed being an advocate for yourself and your family when it comes to bleeding emergencies. Everyone has patients rights and can advocate for themselves, if necessary a patient advocate from the hospital can help you. Thank you to VHF and Bayer for this informative and interactive dinner meeting.
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Mid-Atlantic/Region III Federally-Funded Hemophilia Treatment Centers Annual Meeting
Murai Johnson | VHF Member and Board President
On Thursday, March 23rd Kelly Waters (VHF Executive Director) and I headed up to Alexandria, VA for the two-day Mid-Atlantic/Region III Federally-Funded Hemophilia Treatment Centers Annual Meeting. The Mid-Atlantic Region III consists of 14 Hemophilia Treatment Centers (HTC's) in Pennsylvania, Delaware, Maryland, Virginia, West Virginia and the District of Columbia. Region III is just one of eight regions, each of which is operated by a Core Center. The Core Centers receive funding from the U.S. Centers for Disease Control and Prevention (CDC), administered by the American Hemostasis and Thrombosis Network (ATHN). Region III's Core Center has been located at The Children's Hospital of Philadelphia (CHOP) since 2009.
To learn more go
HERE.
Agenda items included the
SIPPET Trial Discussion, Genetics and Hemophilia, Therapeutics, Ultrasound Imaging, Regional Update, A Research Symposium and a consumer break-out session. It was a great opportunity to learn among HTC staff from our region, as well as connect with local chapter representatives and industry supporters. The ongoing dedication to care, quality, compassion, and access to care was evident from our health care providers, as well as clearly highlighted that Region III's HTCs are a valuable resource at the local, regional, and national level for information about bleeding disorders.
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Adult Retreat - Richmond
Sarahbeth Spasojevich | VHF Member and Board Member
On March 25th and 26th, twenty community members gathered at the Hyatt House in Short Pump for a weekend retreat for adults (affected and caregivers) in the VHF bleeding disorders community. It focused on self-care and rejuvenation, using techniques like mindfulness, goal-setting, and meditation to make life more aligned with important values. On Saturday, James Stroker presented the workshop "
The Power of Self Growth: Finding the New Balanced Mindful You
" where he
taught the group about exercise and introspection. That evening we gatherred at Maggiano's and Shelby Smoak taught about the importance of music to stress and pain in his presentation "The Healing Power of Harmony: Factor Musical Minds". On Sunday, there was "Planning Your Future With Hemophilia" and then Cassie Starks shared her experiences balancing competitive pole-vaulting with her bleeding disorder, and how others could learn to connect mind and body. Saturday's workshop was made possible by our generous sponsor Inalex Communications and thank you to the retreat weekend sponsors: Aptevo Therapeutics, Diplomat Specialty Infusion Group, DrugCo Health, Novo Nordisk, Pfizer, and Shire.
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Act Today to Protect HTC Program Funding at HRSA!
President Trump sent Congress a list of proposed budget cuts to be able to focus on his administration's priorities. The list includes a cut to a program that funds HTCs, known as the Maternal and Child Health Block Grant's Special Projects of National Significance (MCH/SPRANS) program. While the list does not include details of how the cuts will be applied, the fact that the MCH/SPRANS program is included on the list raises serious concerns.
The MCH/SPRANS program provides $4.9 million in funding for HTCs to provide care coordination and other services not reimbursed like nursing, social work, and PT assessments. The CDC hemophilia program, which funds surveillance and blood safety, was not included on the White House list of cuts.
The federal government is currently funded until April 28, 2017 and Congress is working on finalizing the federal appropriations (spending) bills to extend funding for the remainder of fiscal year 2017. Key Republican leaders on the Appropriations Committees have stated their opposition to President Trump's proposed cuts, since they are close to reaching agreement and don't want to enact controversial cuts that might lead to opposition and a government shutdown next month.
We are still concerned that MCH/SPRANS programs are on the list for cuts and are thus under attack. While the deadline for Congress to finalize spending bills is April 28, 2017, we think it is important to make our voices heard early in the process. Please call your Members of Congress to oppose these proposed cuts. Here's what you need to do:
Call the Capitol Switchboard: 202.224.3121 and give your address and ask to be connected with your Senators' and Representative's offices. Once you reach a staff person or voicemail system, use the following bullets to guide your comments:
- Give your name and say that you are a constituent and that you are a member of the bleeding disorders community.
- You are calling to oppose President Trump's proposed cuts to the FY 2017 funding for the MCH/SPRANS program that provides grants to HTCs. Tell them the name of the HTC where you or your family member receives care.
- Ask them to support current funding levels for HTCs funded by the MCH/SPRANS program and CDC.
- The national network of HTCs provides expert, comprehensive care to people with hemophilia and other bleeding disorders. Any cuts to HTC funding would jeopardize our vulnerable patient community.
- Please oppose President Trump's proposed cuts to MCH/SPRANS and maintain current funding levels for both federal programs that support HTCs.
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Scholarship Opportunities for the Bleeding Disorders Community
The Virginia Hemophilia Foundation's (VHF) Lyman Fisher Scholarship was established to honor Dr. Lyman Fisher, a teacher, researcher, and clinician in hemostasis who for many years directed the adult hemophilia program in Virginia. Applicants must have participated in VHF activities and live in the territorial jurisdiction of VHF. Scholarships are one-year awards in the amount of $2,000 for a full academic year.
Application deadline is May 1, 2017.
Other scholarships offered in the bleeding disorders community:
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Hemophilia Federation of America
Fit Factor
Tips to Take Your Exercise Routine on Vacation with You!
Whether you are escaping the winter weather for some R&R by the beach, or heading to a relative's home to catch up, travel disrupts your normal schedule and can make it harder to stay on top of your health and fitness routine. Working out is often easily forgotten on vacation as other activities take priority. On top of that, we tend to over indulge in food and drink making it even more important to get that cardio in. While it takes bit of planning to stick to an active lifestyle on the road, it has the potential to be exciting, motivating, and memorable.
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National Hemophilia Foundation Inhibitor Education Summits
NHF has announced its 2017 Inhibitor Summits.
To learn more and register,
go HERE. Inhibitor Summits have been held for more than a decade, providing families affected by inhibitors with the education and support they often need as they face this serious complication.
NHF will continue this tradition in 2017, by hosting three Inhibitor Summits:
- Thursday, June 1 - Sunday, June 4 in Phoenix, Arizona
- Thursday, June 22 - Sunday, June 25 in Houston, Texas
- Thursday, October 12 - Sunday, October 15 in Baltimore, Maryland (registration for the Baltimore meeting will open in July 2017)
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Sign up
to watch "Maintaining an Active and Healthy Lifestyle"
Spring is the season for renewal and a great time for healthy beginnings!
Join NHF on Wednesday, April 12th at 7:00 pm and learn about the best practices to help your child develop healthy, active habits that he or she can benefit from for a lifetime.
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Type 3 Von Willebrand Disease Conference
Global Blood Disorder Foundation
is excited to introduce the first National Type 3 Von Willebrand Disease Conference, "Making the Connection" in Palm Beach Gardens, Florida from May 12 - 15, 2017.
Patients diagnosed with Type 3 Von Willebrand Disease (VWD) are invited to participate. The conference co-organizers are Ed Kuebler, LCSW and Jeanette Cesta. They are excited to provide the first conference exclusively addressing the unique needs of this rare community. Presenters from all over the country will comprise the faculty that will offer attendees both medical and psycho-social information and resources to help manage living with Type 3 VWD.
The event is free and travel arrangements and a room will be provided for the patient and companion for three nights with departures arranged for Monday afternoon, May 15th. Meals will be provided along with free time activities to promote an environment for making new connections among attendees.For more information on the resort, visit
www.PGAResort.com
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