Facts N' Factors e-Newsletter | September 2015
Join Us In Welcoming Our New Social Work Intern Sasha Jean-Noel!

"My name is Sasha Jean-Noel. I completed my undergraduate education at Florida State University with a Bachelor of Science in Psychology and a minor in Social Work. Currently, I am in Virginia Commonwealth University's Masters in Social Work program and hope to pursue a career as a Licensed Clinical Social Worker, focusing on both mental health and substance abuse. I hope to learn more about working in a nonprofit organization and focusing more on advocacy than counseling and therapy. My hobbies include watching films, enjoying outdoor spaces, reading, and keeping in touch with family and friends."

 
Get Involved

Fall Fundraisers - We Need YOU To Help Make Them A Success! 



VHF will be participating in the Amazing Raise again this year - won't you join us? 

The Amazing Raise is a 36-hour online giving challenge that inspires and empowers supporters of Central Virginia nonprofit organizations in an amazing way, regardless of where you call home. Also when you give during The Amazing Raise, you can help us win additional incentive prizes ranging from $500 to $15,000! The excitement starts Wednesday, September 16th at 6:00 AM.

Ways You Can Help:
  • Share this information with your friends and family - let them know how important the VHF community is to you and why they should donate to us during The Amazing Raise 
  • Share our Facebook posts and re-tweet our tweets leading up to the event to help raise awareness and excitement
  • Donate during the event to help us win additional prizes and then share on your Facebook page and/or tweet that you donated - don't forget to tag us!
 
Saturday, October 31  | 9:30 am
Robious Landing Park | Midlothian, VA 
5K is $30 and Kids Monster Dash/Fun Run is Free!

Join us for a race the entire 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 DJ, food, and more! Sign up today - this SPOOKtacular race is limited to 200 runners!

Ways You Can Help:    
Upcoming VHF Events


 
September 10 - Educational Dinner  Fredericksburg  RSVP 
September 16 - Educational Dinner  Richmond  RSVP
September 16-17 - The Amazing Raise - Online Fundraiser
September 19 -  Family Overnight at Great Wolf Lodge  Williamsburg  Event is Full

 
October 3 - 4 - Adult Retreat  Virginia Beach  RSVP  
October 15 - Educational Dinner (Tidewater Region) Registration Coming Soon

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

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


 

 

 
Event Wrap-up

Educational Dinner - Winchester 

Twenty VHF members and their families gathered on August 6th in Winchester at IJ Canns American Grill to hear a Facts First Presentation sponsored by Baxalta. Megan Shifflett, Educational Consultant from the UVA Children's Hospital HTC presented "Road to Managing Your Healthcare Independently." Parents heard information on "letting go," and were encouraged to cultivate a care giver or two that could act in their place so parents could enjoy a night out or a weekend away. Kids heard about "tools for the road," and were given sample inventories as a self-assessment. Everyone learned about the importance of developmental milestones and the importance of socialization, responsibility, and independence.    

National Hemophilia Foundation - Annual Meeting 
Walker Family | VHF Members      

 
The NHF Annual Meeting August 12th - 15th, was held at the Gaylord Texan, a massive hotel, with a convention center attached. The inside lobby was filled with beautiful waterfalls and fountains in a Texas-style background and several model trains ran around the rock formations. A highlight of the trip was when we went to a Texas Rangers baseball game where the Rangers hit an exciting home run!
 
"In the exhibit hall I earned points for our chapter by eating a cookie off my forehead without using my hands. The booths had many different games and food, mainly sugar. The kids' camp went to the Sea Life Aquarium as a field trip and some kids practiced self-infusion with the Bay-Cuff."  - Levi
 
  "When we arrived at the Gaylord Texan, I was amazed at the inside auditorium. Because of the size of the hotel we had to have a map to avoid getting lost. In the exhibit hall, we went around to many booths. In the different booths we picked out free giveaways plus food and lots of candy. We attended several fun dinners hosted by different companies. I even got to see a new application for logging infusion and bleeds! The Child Care Camp took us to the Sea Life Aquarium with a 360 degree view of a fish tank. I enjoyed the Final Night Dinner at Circle R ranch where we learned to rope and watched armadillo races. The National Hemophilia Meeting was great!" - Josiah
 
In the NHF nursing symposium, the topics covered were hot issues facing the community, such as insurance and inhibitors. Other classes covered diagnosis and treatment of Von Willebrands disease, rare platelet and factor deficiencies other than Factor VIII and IX.

We also heard about the latest updates on gene therapy from researchers, and the news includes very promising therapies for the near future. NHF is emphasizing the My Life Our Future Campaign and is encouraging as many people to get involved and get tested. This will enable individuals via their treatment centers to know their personal genetic mutations and log them in the database so that further research can impact the bleeding disorders community at large in this new era of improving treatments.
             
Our family is extremely grateful for this opportunity to go to NHF this year provided by VHF and we would like to extend our thanks! It's an experience we will not forget!  - Amy Walker

CEO Program for Teens
 
On Saturday, August 22nd eighteen teens and their parents/caregivers gathered in Virginia Beach for the CEO (Career, Education, Opportunity) Program which included a day of skill building and interactive workshops. The module presented to the teens focused on researching post high school education and scholarship opportunities. They came up with impressive presentations in the time allotted and even the adults in the room learned a thing or two! They were so dedicated that some of the teens left lunch early so that they could go back and work more on their group presentations. Giving them something to work on as opposed to just giving them information is the strength of this program. For the parents/caregivers time was spent learning about emotional intelligence and ways to communicate with their children.
 
Many of the teens mentioned that exploring post high school opportunities and scholarships with their peers was a valuable opportunity, and that not having parents/caregivers around to guide and manage made the process much less stressful. A great day was had by all!

Thank you to our sponsor Baxalta.

HFA Teen Advocacy Dinner

On Saturday night, August 22nd, teens and their families from throughout the state gathered in Virginia Beach for dinner, education, and networking. Education focused on advocacy, and explored what is advocacy, and how everyone is an advocate. Whether it's talking to your doctor or educating your child's school about bleeding disorders, advocacy can and does take place outside of state capitols and in your everyday life. Hearing personal stories on how folks successfully managed to advocate at work and at school was a noted highlight for many. Everyone contributed to the conversation; in fact, several of our dinner participants stood up and read facts about bleeding disorders reminding us all that their voice matters! Thank you to our speaker Janel Johnson- Momanyi and the Hemophilia Federation of America for their support in sponsoring this important educational dinner. 
 
Go HERE to see pictures from the dinner. 
Celebrate Summer Event at The Adventure Park
Soren Johnson | VHF Member

After a perfect Saturday spent with good friends at the CEO program, we joined other VHF families at the Adventure Park at the Virginia Aquarium, a zip line and aerial adventure experience in the trees in Virginia Beach. This was a new, challenging and difficult experience. The zip line was part of an obstacle course created to challenge you. It did and I wasn't even on a hard course. I started at 15 feet in the air and progressed to 40 feet. Most of the obstacles were balance based and every once in a while there was some strength needed. On a lot of the courses there were zip lines but for each track, the zip lines ended differently and were various lengths. All in all, the event was a lot of fun but very tiring!

Thank you to our sponsors Baxalta, HPC Specialty Pharmacy, and Novo Nordisk. 

Go HERE to see pictures from the event.


 
Community News
National Meeting Scholarship Winner
Elijah Wilson | VHF Member

My experience in Dallas, Texas at The NHF Annual Meeting was better than I could have imagined! Upon my arrival to the Gaylord Texan Resort I felt right at home. Then it was very nice to meet so many Hemophiliacs like myself. For the first time, I actually felt like part of a large family, not an outcast. Relaxing with the other teens, eating or going to educational meetings were the highlights of my experience. Because of my wonderful time I have become very attached to Texas and I will never forget how much fun I had while being there. 

Go HERE to learn more about scholarships to attend National Meetings - don't miss out! 
VHF Member Attends HeroPath Weekend!  
Will George | VHF Member

My name is William George and I attended Novo Nordisks HeroPath Program 2015. This year's HeroPath was not the first time I attended. I had the privilege of attending the first HeroPath program back in 2014 and I absolutely loved it. My past experience with Jeff Leiken and his team of wonderful life coaches made me sure that I wanted to attend this year's HeroPath program.
 
Novo Nordisk paid for all our accommodations. They paid for the hotel and the rental car so I didn't have to worry about transportation issues. The HeroPath kick-off weekend was held at the ACE Conference Center in Philadelphia. It was great and provided a full catering service so you never went hungry! The seminars and small groups that took place were great. The coaches tackled everyday problems that you run into while living your life. Great advice was given for less than desirable situations. I was also paired with a life coach that will be mentoring me for the span of the next year.
 
HeroPath is a unique, new, and beneficial program that anybody can learn from. I am so grateful that I got the opportunity to attend. 
 
National Hemophilia Foundation 67th Annual Meeting
 
This was an exciting year for VHF at the NHF Annual Meeting. It was wonderful to see several Virginia families, HTC staff, and our industry sponsors.

Highlights of the meeting included:
  • Presenting NHF with a beautiful piece of wood art (made by our own Kevin O'Connor) in appreciation of their support and teamwork over the years. The design was based on our 2013 VHF Annual Meeting T-shirt and had a row of birds and the Helen Keller quote "Alone we can do so little; together we can do so much". 

  • Receiving the "World Cup" from the World Federation of Hemophilia for financially supporting their efforts to improve and sustain care for people with inherited bleeding disorders around the world.

 

 

 

  • Winning TWO Awards of Distinction: One for our Facts N' Factor Newsletter. This award recognizes outstanding communication vehicles that successfully distribute pertinent information to the bleeding disorders community. And the second for our Teen Retreat. That award recognizes programs that identify and reach out to un-served or under-served people with bleeding disorders.
We are so appreciative to all of you - attendees of events, volunteers, writers of articles, and donors and/or sponsors who make these amazing programs possible. THANK YOU!

Hemophilia Association of the Capital Area (HACA) to Hold Spanish Speakers Bleeding Disorders Educational Conference
 
September 20, 2015 at the Marriott Metro Center in Washington, DC.
The conference will be held entirely in Spanish. There will be no English translation.
 
Please see flyer for more information.  Please circulate it to anyone who might be interested in attending.   Spanish Flyer   English Flyer
 
If you speak Spanish and would like to attend register HERE

Thank you!
-Karen Krzmarzick
HACA Executive Director
HFA's Back To School Tool Kit


Sending your child with a bleeding disorder back to school can be overwhelming and stressful. To help you, Hemophilia Federation of America has updated their important Back To School Toolkit with NEW information to provide you with additional resources and tools to navigate the school year, customizable presentations, tips from other parents, and much more!  


 
HTC News

Dr. Gary Woods Joins CHKD!

Dr. Gary Woods is joining the Children's Hospital of The King's Daughters Bleeding disorders team!  Dr. Woods focuses on pediatric hemostasis and thrombosis, or children who tend to bleed more than they should and/or have blood clots.
 
Dr. Woods is one of the first physicians to complete an extra one-year clinical pediatric hemostasis and thrombosis fellowship in the U.S, electing to pursue extra training to ensure that the families affected by these conditions are provided the best care possible. Although hemostasis and thrombosis is his primary interest, he also has a strong clinical interest in caring for children with bone marrow problems, other hematology related issues, and those with hematologic malignancies like leukemia.

Having grown up in Virginia Beach, Dr. Woods was happy to return to the region to practice. In his free time he is an exercise enthusiast, enjoys going to the movies, and loves spending time with his wife and their two dogs, a chocolate Labradoodle named Miley and a yellow Labrador named Mable.
 
Mental Health Toolbox 
Megan Shifflett | UVA-HTC Educational Consultant 
 
Stress, anxiety, and depression are problems everyone faces at some point in their lifetime.  They are unavoidable. But learning to minimize signs and symptoms of anxiety and depression is key to healthy living. 
 
While attending the National Hemophilia Foundation Conference in Dallas I had the opportunity to attend a session entitled Out of the Woods-Skills for Coping with Anxiety and Depression. The speaker, Laurel Pennick, a LCSW from Arizona, shared the concept of a Mental Health Toolbox. 
 
In order to live healthier lives we need a variety of tools in our toolbox. We can never fully avoid stress, but we can learn tools to help minimize the impact it has on our bodies and our families. One tool may not do the trick when feeling anxious, but may work for depression.  Another might work well in the office, but not at home. Creating a toolbox that contains a variety of ways to handle difficult times will lead to a healthier, happier you.  
 
Tools might include walking, exercising, deep breathing, yoga, meditation, guided imagery, counseling, acupuncture, massage, healthy diet, plenty of sleep, routine bedtime, listening to music, dancing, practicing gratitude, journaling, calling a friend, taking a hike, having a cup of tea.

What's in your toolbox?  What tools are you teaching your children?  Make a list as a family and see what works for each member. There are many more tools out there.  Try something new today.  It may be just what you need to help reduce your stress.  
 
Note:  All the tools mentioned may not be appropriate for members of your family based on their medical condition. It is always a great idea to check with your HTC before starting a new practice. 

Congratulations Megan!

Join us in congratulating Megan Midura, VHF Board Member and Pediatric Hematology/Oncology Social Worker at CHKD. She will be getting married to Danny Songer in September 2016. Danny has been to many VHF events including the bowl-a-thon, Batter up, and the annual meeting. Cheers Megan and Danny!


 

 
Save The Date

November
  • November 3 - Educational Dinner (TBD)
  • November 14 - Educational Lunch and Event at VA Air & Space Center (Hampton)
  • November 17 -Women's Night Out (Richmond)

December

  • December 8 - Educational Dinner and Garden Fest of Lights (Richmond)
  • December 12 - Holiday Parties (Charlottesville, Richmond, and Norfolk)

January

  • January 17-18 - Advocacy Training and "Richmond Days" (Richmond)

757-705-1332

Thank you to our e-Newsletter supporter Baxalta  www.baxalta.com