Spring 2019

VHL ALLIANCENEWSLETTER OF THE

by Haley M, VHL patient and VHLA Ambassador

In 2015, I was a normal wife,mother, and VHL patient living

with my disease. That year, my second daughter was born. Genetic testing revealed that she had inherited my genetic mutation. This was devastating as I already had a daughter and nephew who had both tested negative. We were hoping to wipe out VHL for the next generation of our family. But that wasn’t to be. A ping of regret hit me; my husband and I had made our personal decision not to pursue PGD (Pre-Implantation Genetic Diagnosis). But then a blinding light of clarity hit me, if I had gone through PGD, then I wouldn’t have THIS daughter, I would have a different child, from a different, un-affected egg. That moment brought so much certainty to my life. We did make the right decision and NOW it was finally time for me to do more.

From that day forward, I decided I was not going to stop until I made a difference. It

became my personal mission to help FUND our cure. Unfortunately, we all know that money often makes the world go round and make things happen. For years, I had participated in fundraisers and walks for many worthy causes such as

breast cancer, pediatric cancer, autism, and more. I had seen them raise millions of dollars for their causes, making true advancements in science for their diseases. Now it was my time to do the same for VHL. I had often talked about getting more involved in fundraising for the VHL Alliance, but now I finally had the right motivation to get me moving. My little girl was just the spark I needed!

In the last 4 years, we have held various events such as Dine to Donate nights, pancake breakfasts, 50/50 drawings, painting parties, online clothing sales, and more. To be very honest, it is so much easier than I ever thought it would be. Don’t get me wrong, it took some time in the beginning. Now that I have experience and resources available to me, I can set up many of these events in a few quick phone calls and emails.

If you also have hoped to do something more to support the VHL Alliance, trust me, you can! Often the very first step is just asking a question. If you pick up the phone and call your favorite restaurant and spend just a few moments telling the manager about your disease, many are often glad to help by hosting a donation night or donating a gift card for a drawing or auction item. Taking that first step often gets the ball rolling.

The VHL Alliance has also created some great resources to assist you. I know that fundraising and asking people for money can

MAY IS VHL AWARENESS MONTH!

CONTENT

May is VHL Awareness Month!

Happenings

Who is Hiding from VHL?VHLA Ambassadors

Coffee Against Cancer a conversation about VHL

CCC Corner‘VHL Doctor’ and Therapist Combined

NIH UpdateMyVHLJulie Flynn Hope Retreat for Young AdultsAnnual Family Weekend

What are you doing this May for

VHL Awareness Month?

continued on page 2

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MAY IS VHL AWARENESS MONTH!continued from page 1

HAPPENINGS

Michigan Annual VHL Meeting April 13Ann Arbor, MICancer in Our Jeans EventApril 27, 11 am – 2 pmHouston, TXNYC VHL Patient and Family Meet Up April 27, 8:30 am - 1 pm Hosted by the Columbia/New York Presbyterian VHL Comprehensive Clinical Care Center, New York, NYLuLaRoe online fundraiser May 2-3VHL Pancake Breakfast May 4, 8 am - 10 am Warren, MIVHL Five Below Shopping FundraiserMay 5-11 Sterling Heights, MI

Dine to Donate at Beltline Bar & Café May 6Grand Rapids, MIMom’s Day RunMay 12Ventura, CA

Coffee Against Cancer May 18 vhl.org/coffeeagainstcancer

Savers FUNDriveJune 1Arcadia, CAJulie Flynn Hope Retreat for Young AdultsJune 14-16Boston, MAAnnual Family WeekendOctober 18-20Indianapolis, IN

For more information visit: vhl.org/awareness

May Awareness MonthWhat are you doing to promote VHL Awareness?

Contact Heidi at heidi.leone@vhl.org for help or ideas or look on Pinterest: pinterest.com/VHLAlliance

often be daunting. Believe it or not, I have never had a single person express anger or frustration with my request. Even if you don’t receive a donation or set up an event, think of it is as an opportunity to spread awareness about VHL. I have seen so much kindness and thoughtfulness, it has warmed my heart and motivated me to keep on going.

If you are interested in helping FUND our cure and spreading awareness, go ahead take a small step today. Find your spark, you can do this. I would even be willing to coach you along the way if you would like some help. Trust me, we have momentum now and we will get there. A cure or treatment is in sight! Let’s make a difference! May is VHL Awareness Month, which is a great time to get something started. Let’s all work to see all VHL warriors, including our sons and daughters, join with VHLA to Cure Cancer through VHL!

VHL ALLIANCE | Spring 2019 | 3

WHO IS HIDING FROM VHL?THE VHL DILEMMA

by Emily Billicheck, Jane Beasley, & Jennifer Galenkamp, VHL patients and/or caregivers, VHLA Board Members

If you are reading this newsletter, chances are youtry to actively manage your VHL medical care, or,

if you are a caregiver, help your VHL patient keep on top of their care. We know that with “careful monitoring, early detection, and appropriate treatment, the most harmful consequences of this gene can be greatly reduced, or in some cases even prevented entirely” (VHL Handbook). Some of you may know VHL patients who are not so diligent. Maybe you worry about family members and friends who don’t follow the surveillance guidelines – possibly even despite yourconstantly “reminding” them.

So why, then, do patients fail to get their surveillance? More importantly, what can we do to ensure that the people we love have the best possible VHL outcomes? For some, the barrier is financial – lack of insurance or high co-pays. For others, it may be difficult to make the time to visit a Clinical Care Center, NIH, or another facility – particularly if annual scans involve travel and overnight stays. We might know patients who just want to pretend that VHL doesn’t exist, at least as long as they are symptom-free. Finally, people who face chronic long-term illnesses are at risk of developing depression on top of their illnesses. Clinical depression can affect motivation in all areas of life.

Even if we are able to understand the reasons and help them find ways to overcome practical obstacles, how do we or can we convince our loved ones to take control of their health and begin to get their scans?

To be clear, there is no easy answer. Change is difficult. “People only change when the pain of change is less than the pain of staying the same”

(Tim Guimond, MD, Casey House). Change is not a one-time decision; it is a dynamic process unique to each person. Internal motivation for change is key. Each individual‘s reason for change is different. It is normal to have mixed feelings about changing, and for a person’s level of motivation to vary across time. We may be able to persuade or coerce compliance in the short-term. But, any lasting change in attitude and behavior needs to come from within.

One approach that will definitely NOT work, is trying to push that person into doing something WE think is right for them. Be a supportive listener. Help them (if they are willing) to see that change is not

only needed, but possible. It will take time and will require open and non-judgmental conversations. Listen, and take the time to understand their motivation, without judging them. Ask open-ended questions. Encourage them think through the pros and cons of changing (or not changing) their behavior. Highlight what they are already doing right, and let them know that you believe in their ability to make changes (even scary ones). Be supportive of any ideas or reasons they may have to make that change. Offer your support in helping them achieve that change.

Statistically, there may be about 10,000 people with VHL in the U.S. We don’t know how many cases have been diagnosed, but we do know that only about 1,000 people are being seen at Clinical Care Centers. Just under 1,000 patients participate in the MyVHL: Patient Natural History Study. If we want to increase our chances of finding a cure, we need courage to face the disease, pursue the preventative medical care that can save and prolong lives, and contribute our individual VHL stories to MyVHL. We don’t know whose medical history will provide the key to a cure - it might be yours!

“Listen, and take the time to understand their

motivation, without judging them.

Ask open-ended questions.”

¡VHL Alliance se complace en anunciar que MyVHL ahora está disponible en español!

vhl.org/MyVHL

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For more information on the AMBASSADOR

program or to get involved, please

contact Heidi Leone at heidi.leone@vhl.org

VHLA AMBASSADORS: VHLA UPDATE

GROWING THE MISSION OF A CRITICAL ORGANIZATION

The VHLA Ambassador plays a crucial part in the work of the VHL Alliance, dedicated to those affected by VHL through education, support, and research. The work is essential in helping reach our overarching vision of Curing Cancer through VHL!

VHL Alliance Ambassadors represent the organization, its mission, its vision, and its policies. The role of the Ambassador falls into three main focus areas: Awareness, Engagement & Outreach, and Fundraising.

by Connie Rath, VHL caregiver, VHLA Board Member

What if every newly diagnosed patient had animmediate new friend who understood many

of their issues and had valuable recommendations to medical and other resources?

And what if each VHL patient and family member had a home base community of people committed to living better lives while living with VHL?

And could every person in the community have some way to help raise money and awareness to find the cure for cancer through VHL research?

This spring, AMBASSADORS are ready to bring new energy to the people they serve in the VHL community. Most of the Ambassadors were previously known as Chapter Leaders. Chapter Leaders wore many hats, sometimes too many. Some of the best Chapter Leaders have been very effective event organizers and others have had the most success and satisfaction talking directly with patients and families providing care and attention. The newly designed Ambassador role gives people a chance to do what they do best.

From recent interviews with people in these lead volunteer roles, several points came to light:

1. VHL patients want and need moreinformation - especially newly diagnosed patients who want to know where to go and what to do. Ambassadors can be a first level support who can point to experts for a range of needs.

2. Regional events are a way for patients tolearn and get to know each other. Ambassadors are generally assigned by region and encourage people to participate.

3. Social media is a way to learn about healthand wellness opportunities via VHL channels and to be inspired by stories of VHL patients.

4. Ambassadors take pride in hearing andunderstanding the struggles and wins of fellow VHL patients.

5. MyVHL is one of the most importantcontributions a patient can make to the future. Ambassadors can answer questions and also point to potential trials and advances in health research with application to you.

Some people to know in the AMBASSADOR effort:

Pete is a NYC Ambassador who has been living with VHL for over 20 years. He has contributed

to major events in the last years. He finds his best moments when he makes a new connection with a fellow VHL patient and can be in a mentoring role. If you live in his area, get to know him.

Abby has extra energy to learn more about VHL and share what she knows - especially with younger people. She is sensitive to issues about primary care and mental health. She is creative about communicating. As an

Awareness Ambassador Mentor, she will be helpful to other Ambassadors building awareness. She lives in Indiana.

Haley has been a leader among Chapter Leaders and a model for fundraising events. She will be a great resource as a Fundraising Ambassador Mentor. She lives in Michigan.

Josh Mann and Heidi Leone of the VHL Alliance office in Boston are at the heart of patient engagement and communication. They work tirelessly to reach more patients with as much help and information as possible.

Ilene Sussman, Executive Director, has been thinking for some time that EDUCATION is what the organization can best offer and patients most need. It is her direction that mobilizes the Ambassador movement. She is an expert on VHLA research and determined to multiply available VHL resourses.Connect with your regional AMBASSADOR. Emails can be found at vhl.org/regions.

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The VHL Alliance Clinical Advisory Council has recently approved an updated set of VHL ClinicalCare Center recognition guidelines. This update is meant to encourage each institution’s

continued commitment to coordinated care, involvement in VHL research, and active participation in the VHL education of healthcare professionals and the entire community. The guidelines fall under four categories: Research, Education, Patient Care, and General. Some examples are: educating other medical professionals including the next generation, distributing the center’s patient packet, participating and/or keeping up to date on VHL research, working with the center’s patient liaison, assessing psychosocial needs, hosting patient and family events, and maintaining an informative webpage. The updated guidelines better reflect VHLA’s goals and will serve to ensure quality, coordinated care for VHL families for years to come. These new guidelines have been distributed to all of the VHL Clinical Care Centers and the rollout is expected to begin with VHL CCCs renewing in January 2020.

Congratulations to the team at Huntsman Cancer Institute in Salt Lake City, UT, which has been recognized as a VHL Comprehensive Clinical Care Center. We know that they will continue to provide the best care possible for the VHL community in Utah and beyond. If you are interested in receiving care at Huntsman, please contact their Point of Contact: Samantha Greenberg, MS, MPH, CGC, 801.213.5774; VHLClinic@hci.utah.edu

Do you or a family member receive care at a VHL Clinical Care Center? If so, we want to talk to you! If you are aware of any local resources that have been helpful to you or other VHLers in your area, please let us know. Please send any information that you have to Josh at: josh.mann@vhl.org.

We want to know about your experience at a C/CCC. You can submit feedback at: vhl.org/cccfeedback. Please note that you can remain anonymous if you choose.

CCC CORNER

Why Should you Participate in MyVHL?Find out what healthcare professionals and other patients have said:

vhl.org/myvhl/videos

May Awareness MonthThe VHL Alliance is excited to introduce the 1st Annual Coffee Against Cancer. We encourage each member of the VHL community to invite friends, family, and neighbors for a cup of coffee and spread awareness about VHL. Socialize, drink, eat and chat. Chat about your personal experience and how solving the VHL gene brings us closer to curing many other forms of cancer. Curing Cancer through VHL. Post pictures on Facebook and send them to info@vhl.org to post on vhl.org. Use #VHLCoffeeAgainstCancer to spread awareness!Other ideas to enhance your Coffee Chat can be found at vhl.org/coffeeagainstcancer.

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‘VHL DOCTOR’ AND THERAPIST COMBINED

by Frauke Pelz, DHIC, MD, Coordinator of the VHL Service for South Wales,Cardiff, UK

In 1997, after a career break to have my children,I came across an advertisement for a part-time

post as a Clinical Geneticist with responsibility for the coordination of the VHL Service for South Wales, based in Cardiff, UK. I had previously worked in a training post in Clinical Genetics. Though I knew little about VHL, I applied for the job. Now 22 years later, I am sharing with you how working with “my” VHL families inspired me to seek training in psychotherapeutic counselling.

Outwardly, I did well with the various responsibilities of my post. More importantly, I became a witness of “my” VHL families’ unfolding lives with all their individual trials and tribulations. The literature afforded me many useful facts, but it did not teach me about what it felt like to live with VHL. The more I listened to “my” families and patients, the more I understood that VHL was not an ‘interesting medical condition’ but really a lifelong, 24/7 commitment, that at times, would seriously challenge “my” patients’ and their families’ resilience, dreams, and faith in life. VHL could badly hurt not only the bodies but the souls, too. I witnessed “my” VHL families numerous, varied paths to the sad losses of physical and emotional health, of work opportunities, of income and independence, sometimes of relationships and tragically, sometimes even of loved ones. For 22 years, I have been privy to their breath-taking roller coasters between hope and despair.

I gradually changed MY relationship to VHL and understood that our multidisciplinary expert roles

were not to rescue patients. Our role was to limit the damage that VHL can cause and to support our patients on their individual journeys towards integrating their VHL into their lives. I learned about mindfulness and enrolled into introductory training in Cognitive Behavioural Therapies and Solution-focused Brief Therapy. Feedback suggested that “my” patients noticed and appreciated the change of our meetings from “surveillance reviews” to “living with VHL explorations”.

One day I listened in silent terror to a patient’s deepest and darkest suicidal despair. I inwardly panicked with what to do, how to find the right words to tell my patient that they mattered to me, and also, I had grave concerns for them. That night I decided to step up my psychological learning and to train as a therapist. I also built a link to clinical psychology for specialist support for “my” VHL patients.

Within my role as a doctor, I have integrated psychotherapeutic and medical approaches when working with issues directly related to VHL, however, I do not

offer therapy for any other issues. I believe that my additional qualification has made me a more effective and empathic listener and communicator, who now feels able to walk caringly and deeply alongside her patients in their individual triumphs and tragedies. I have learned some powerful psychological tools to aid “my patients” in their coping strategies and resilience. I feel clearer when I need to refer individuals for additional support and more empowered to offer “my” VHL families more therapeutic relationships, without blurring the boundary with psychotherapy.

MEDICAL CARE

“Our role [is] to limit the damage

that VHL can cause and to support our patients on their

individual journeys towards integrating their VHL into their

lives.”

NIH UpdateThe VHL Alliance has been informed that patients with VHL-related pancreatic manifestations can now be seen within the Surgical Oncology Program, National Cancer Institute. For more information, you may contact the team directly by email at ncieobinquiry@mail.nih.gov or visit: ccr.cancer.gov/surgical-oncology-program/naris-nilubol

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Ilene Sussman, PhD Executive Director ilene.sussman@vhl.org

Heidi A. Leone Director of Advancement heidi.leone@vhl.org

STAFFJoshua Mann, MPH Director of Engagement & Outreach josh.mann@vhl.org

Samantha Robinson Adminstrative Assistant samantha.robinson@vhl.org

Steven Angotti, JDEmily BillcheckGordon CookeBarbara CorrellJennifer Galenkamp Eric Jonasch, MD

Stacy Lloyd, MPHMark PallanschConnie Rath, EdDSoniya SapreAnna Waller Deanna Wickizer

OFFICERS: Doug Karle, ChairCamron King, Vice-ChairSeth Horwitz, TreasurerJane Beasley, Secretary

BOARD OF DIRECTORS

Ages 18-32 June 14 -16, 2019 Boston, MA

Julie Flynn Hope Retreat for Young Adults

MyVHL:

Do you want to help find a cure?

Learn more about your VHL and contribute to finding a cure. And, when you complete the surveys and upload your scans (or submit a Records Release Form), you will be eligible to receive a $50 Amazon gift card. All of the information shared in MyVHL will remain secure and confidential.

PARTICIPATE NOW!! vhl.org/MyVHL

The VHL Patient Natural History Study

Space is running out! Register now at: vhl.org/yar

OCTOBER 18-20, 2019 — INDIANAPOLIS, IN

Friday Evening Fundraiser

Annual Family Meeting

Teen Event

2019 Team VHL 5K Run/Walk

Tickets and Registration for all events at: vhl.org/familyweekend

REGISTRATION NOW OPEN! 2019 VHLA ANNUAL FAMILY WEEKEND

Newsletter of the VHL Alliance1208 VFW Parkway Suite 303Boston, MA 02132

ADDRESS SERVICE REQUESTED

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