Facts N' Factors Newsletter October 2015

Facts N' Factors e-Newsletter | October 2015

If you are ever looking to access old copies of our Facts N' Factors Newsletter go HERE . We have issues from 2006 to present day archived on our website.

Get Involved

Join us Saturday, October 31st at 9:30 am and get your Halloween started off on the right foot with our Trick or Trot 5K! This event will be held at Robious Landing Park along the scenic James River in Midlothian. The 5K is $30 and the Kids Monster Dash/Fun Run is free, all proceeds benefit the Virginia Hemophilia Foundation.

This race has something the whole family can enjoy; costumes are highly encouraged and treats will be given along the way! Also not to be missed is the pre-race Halloween party with a live DJ, seasonal treats, costume contest with prizes, and more! Help us spread the word go HERE to download a flyer to print and share.

Go HERE and sign up today - this SPOOKtacular race is limited to 200 runners!

Upcoming VHF Events

October 15 - Educational Dinner "Pain Management 101" (Virginia Beach) RSVP

October 24 - HACA National Hemophilia Walk (Washington, DC)

October 31 - Trick or Trot 5K and Monster Dash Fundraiser (Midlothian) RSVP

November 3 - Educational Dinner "Constructive Conversations" (Staunton) RSVP

November 14 - Educational Lunch and Community Event (Hampton) RSVP

November 18 - Women's Night Out - Paint Nite Event (Richmond) RSVP

Event Wrap-up

Educational Dinner - Richmond
Sasha Jean-Noel | VHF Social Work Intern

On Wednesday, September 16th, over a dozen VHF community members gathered in Richmond at the Southerly Restaurant & Patio at Southern Season for dinner and education. Sara Rakestraw, an Oncology Social Worker from Bon Secours Hospital and VHF Board Member, gave a presentation on the importance of self-advocacy.

Attendees heard information about the correlation between self-esteem and self-advocacy, the nature of self-esteem, and the principles of self-advocacy. Sara used personal anecdotes to emphasize that self-advocacy can be used in many situations, such as meetings with your health care professional or everyday social situations. The audience actively participated by giving examples and sharing stories.

Thank you to Baxalta for sponsoring this educational dinner.

We hope that you join us at one of our upcoming dinners offered through out the state, go HERE to learn more.

Amazing Raise 2015

Murai Johnson | VHF Board President

THANK YOU to everyone that participated in the Amazing Raise again this year - What a success and a great 2 days! This year we raised $3300 in just 36 hours and this money will go directly toward sending kids to Camp Youngblood. We feel great about this annual online fundraising event because we continue to grow our donors and amount raised each year thanks to the generosity of members like you!

Here are some highlights:

93.33% Board Participation
100% Staff Participation
42 Gifts
$3300 Total Raised ($1000 from Novo Nordisk, and $2300 from individual donors)

This year vs. previous years:

Had the most gifts
Raised the most money
Raised the most money from individual donors
Had the most board participation

Go HERE to take a look at the rest of our local non-profits and their successes during the Amazing Raise.

Thank you again, we couldn't have done it without you, your families, friends, and our members!

Family Overnight - Great Wolf Lodge

Once again the Great Wolf Lodge Family Overnight was a GREAT success.

More than 200 people attended this year's family overnight event held in partnership with the Hemophilia Association of the Capital Area. The event, held September 19 at the Great Wolf Lodge in Williamsburg, was open to individuals with bleeding disorders and their immediate family. Ann Lowish, RN, CRNI, led an informative talk on preparing for school, 504 plans and IEPs. Thanks to premier sponsor MedPro Rx and supporting sponsors Baxalta, Bayer, CSL Behring, Emergent BioSolutions, and Novo Nordisk for funding the event.

"Thank you Kelly and Heather for inviting me to write a few lines on the Great Wolf Lodge Family Weekend! My family, (Eileen, Aaron, Francis, Penelope) and I arrived at GWL just in time for dinner. Heather greeted and registered us quickly and we got right to dinner and the Educational topics. Dinner was just what we needed to fuel the slide riding wave crashing water blasting plans our family had in mind! We find that we always enjoy the chance to catch up with our VHF family and doing so at GWL is icing on the cake! To the board, staff, and all the tireless volunteers of VHF thank you so much for seamlessly weaving bleeders of all styles and professionals of the bleeding community to create fantastic and rewarding events. Thank you for having us as a part of this family." - Aaron Bunn

Go HERE to see more pictures from the event.

Community News and Articles

In Memory

For those of you that have attended our Adult Programming over the years we wanted to inform you of the passing of two familiar faces that will be deeply missed in our community.

Hemophilia Association of New Jersey Past President Joe Caronna. Founder and CEO of Inalex Communications (a national education and support organization that partners with us for our Adult Retreat). Joe assisted, counseled, and touched the hearts and lives of thousands of individuals in the bleeding disorders community. His laughter, warmth and compassion will be sorely missed.

VHF community member Sandra "Ann" Beck. If you ever had the pleasure of meeting Ann you know that her quiet kindness and warm smile will be truly missed. Ann was a dedicated member of Mt. Bethel Baptist Church in Kenbridge, VA working and serving in multiple roles. She was also employed with Lunenburg County School as a Substitute Teacher/Behavior Aide where she was truly loved by all she came in contact with. Our thoughts and hearts go out to her family during this difficult time.

Hemophilia Federation of America's Resource Library has over 100 downloadable toolkits, documents, recorded webinars, and additional resources to help you and your family navigate life with a bleeding disorder.

VHF Members In The News

At last year's Wine Tasting and Silent Auction Fundraiser, the Spasojevich's were the lucky winning bidders of the Dan Butler Photography Package. Little did they know that their families' portrait session would lead to an invitation to participate in a fun segment called "Nikki-Dee Can You Be Me?" on WTVR Channel 6 News.

"So we got some great photos of the kids out of the auction, but also this very fun experience. The kids had so much fun filming it. And Dan Butler was wonderful

to work with. He was truly gracious about Jack's incapacitated leg and crutches, and chatting about the Virginia Hemophilia Foundation. I highly recommend him for a future fund-raising." - Sarabeth Spasojevich

Thanks for sharing Sarabeth, and with such a sweet and engaging family it is easy to see why they invited you to participate!

Save the date for our next Wine Tasting and Silent Auction Fundraiser on Sunday, April 24, 2016 at The beautiful and historic Valentine Museum in Richmond, VA.

WHSV Channel 3 Student Athlete Of The Week Jordan Plogger

We were thrilled to receive an email from Mary Ann Plogger updating us on her son Jordan and his success as a student athlete at R.E. Lee High School (Go HERE to read the article and watch the video).

"I wanted to share this link so you could see how much the foundation helped Jordan get started in golf. If it hadn't been for the financial support of the Blood Buddies program back in 2010, we would not have been able to get him into tournaments during that time. Jordan is now a senior and has a bright future in front of him! Thank you all so much!!" - Mary Ann Plogger

Congratulations Jordan!

We no longer have our Blood Buddies program, but we do have the Terry Lamb Enrichment Scholarship that focuses on leadership, volunteerism and/or health promotion. The scholarship can be used for any program (i.e. camp, educational/life skill classes, fitness programs or activities, etc.) that enhances one's self-esteem, confidence, overall health, leadership skills, areas of interest, development of life skills, and volunteerism. The application can be found HERE.

The Patient Relationship with Industry

Dawn Rotellini | Vice President Chapter Development & Education, NHF
Michelle Rice | Vice President Public Policy & Stakeholder Relations, NHF

How many of you remember the first time you heard the terms Hemophilia, von Willebrands or even "bleeding disorder"? Whether you have a family history of bleeding disorders or not, diagnosis can be frightening. Adding to the fear is the use of new terminology, clotting factor, HTC, specialty pharmacy, etc. If you do not have a family history, another factor contributing to your fear is not knowing anyone else affected and not knowing what to expect.

Comprised of patients, families, friends, local and national advocacy organizations, health care providers, manufacturers and pharmacy providers, the bleeding disorder "community" is a vital resource for those affected and their families. Very few communities are able to come together and support each other the way this community has for many years.

While the spirit of the community hasn't changed, its membership has grown and various rules and regulations have been put into place that impact the way some of these members interact. Over the years, the number of manufacturers and pharmacies serving the community has grown.

The National Hemophilia Foundation (NHF) often receives calls inquiring about the "relationship" between industry and patients and whether or not NHF has established any guidelines relative to these relationships. These inquiries have increased as consumers have transitioned into positions within industry. We understand that our industry partners are important to not only Chapters, but to patients as well. While NHF does not have a formal set of guidelines, we choose to follow the rules/laws established by state and federal government and the trade associations representing manufacturers and specialty pharmacies. We also encourage our member chapters to follow that same path and over the past few years through our "How to Be a Good Consumer" series, we have begun to encourage patients to learn about and adhere to those laws as well.

Go Here to continue reading.

NYLI Is Now Accepting Applications

This three-year program is a unique opportunity for 18-22 year olds with a bleeding disorder or who have a sibling with a bleeding disorder from the community to become a part of a national group of other young leaders.

The online application, as well as additional information about the program, can be found HERE. All application materials must be submitted online by October 31, 2015 . Applicants will be required to complete the main application, as well as submit two letters of recommendation: one from a member of the bleeding disorders community, and one from a personal or work reference.

If you have any questions, please contact Grant Hiura, Education Coordinator, at ghiura@hemophilia.org or 212-328-3735.

Advocacy

Advocacy Consultant Report October 2015

Becky Bowers-Lanier | VHF and HACA Advocacy Consultant

Autumn is here! General Assembly elections are (almost) here! And we ramp up our advocacy efforts!

First, the elections and why they are important.

On Tuesday, November 3, we have the citizen privilege to elect all 140 members of our General Assembly. These dedicated public officials deliberate and pass the laws that govern so many areas important to us-public education, expenditures of public funds for health care, transportation, the environment, public safety-to name a few.

Please exercise your right to vote! Each of us will be voting for our state delegate and senator. Some races are competitive; most are not, due to gerrymandering. Regardless of whether your elections are competitive or not, please vote.

Read about your candidates' perspectives. Google them! A full listing of all the candidates can be found on the State Board of Elections website.
Attend town hall gatherings or candidate debates and forums to see how they communicate their issues to the public.
If you know who you are supporting, think about working for the candidate or putting up a yard sign on your property.
Get involved. Thanks!

Second, VHF advocacy efforts.

We've re energized our advocacy work group. Along with the Hemophilia Association of the Capital Area, our work group is meeting bimonthly via conference call. We've participated in excellent discussions on state policy issues affecting our community and CMS limitations on premium assistance by charitable organizations. If you would like copies of the notes from our last two meetings or the PowerPoint presentations, contact me (Becky Bowers-Lanier-contact info below).

Our next meeting is Monday, November 16th, from 7:30 - 8:30. We'll be hearing a presentation from NHF on federal issues affecting the community, speculation on how the November elections will have an impact on our community, and looking forward to 2016 Richmond Days January 17 and 18, 2016. Speaking of which, please mark your calendar for Richmond Days!

If you have any questions about finding out more information on your candidates for the General Assembly November elections, becoming a member of the Advocacy Work Group, or Richmond Days, please don't hesitate to contact Becky Bowers-Lanier at becky@B2Lconsulting.com.

HTC News

VCU Wraps Up NHF Capacity Building Grant Project

Lauren Dunn, MSW | VCU-HTC Social worker

It's hard to believe, but it's been 2 years since VCU was awarded a capacity building grant to support genetic services through our comprehensive clinics. Funding from this project allowed us to bring a genetic counselor onto the team at VCU. By now, most of you have had the opportunity to meet with Tahnee Causey, MS, CGC, the genetic counselor for the VCU HTC. In the past 2 years, Tahnee has been able to provide assessments for genetic testing and genetics education for all patients seen in the adult and pediatric comprehensive clinics at VCU. She has also met with patients and families to review genetic testing results obtained through the CDC inhibitor study.

In addition to providing genetic services in the clinic, Tahnee has also been very busy with outreach and education efforts through local and national programs. Tahnee conducted educational sessions for the VHF Annual Meeting, Women's Night Out , and a First Steps Program for new parents. She also presented 2 consumer sessions at this year's NHF Annual Meeting in Dallas, TX.

Tahnee also provided valuable support to the HTC team, providing education in-services for the HTC team and helping the HTC to navigate insurance authorizations for genetic testing. She led a study to assess the VCU-HTC patient population's access to genetic testing and counseling services based insurance coverage. Results of this study will be available soon.

The NHF capacity building grant was a limited, 2 year funding project designed to assist HTCs to develop core services. This financial support has provided significant support to help VCU provide genetic counseling support to patients, staff development for team members, and to organize genetic testing results and EMR documentation. This funding created a firm foundation for genetic services and the HTC plans to build on this foundation by continuing to support Tahnee's role on the HTC team. Keep an eye out for Tahnee in clinics and future chapter events as she continues to support the bleeding disorders community.