FAQ

Table of Contents

 

BACKGROUND INFORMATION

Q: What is The Dragonfly Foundation?

A: The Dragonfly Foundation, a 501(c)(3) non-profit, provides provides emotional support, caring distractions, and quality of life enhancements for young cancer and bone marrow transplant patients and their families.

For children and young adults who have not had the opportunity to live their life to the fullest, we must be even more dedicated to supporting them as they face the physical, emotional and financial challenges of their illness, their extended hospitalizations, and their long-term recovery. The services we provide also support and benefit immediate families who also struggle with the implications and realities of a loved one having a life-threatening disease.

Q: Which geographic regions are served by the Foundation?

A: Most patients and families are local to the partner hospitals we serve. In addition, many come from around the world to seek treatment from specific doctors and hospitals. Our services and events are local to our partner hospitals.

Q: Why focus on C.A.R.E. (Caring, Community and Awareness that results in better Emotional health) rather than raising funds to find a cure for cancer?

A: The public has been made very aware about the need to find “a cure” — and rightly so. However, we must remember to C.A.R.E. for patients and their families while we wait for a cure. Unfortunately, many patients will not get well before a cure can be found. It has been medically shown that a positive outlook can change medical outcomes. For children and young adults who have not had the opportunity to live their life to the fullest, we must be even more dedicated to providing smiles, caring distractions and quality of life enhancements as they face the challenges of their illness, their extended hospitalizations, and their long-term recovery.

Q: In what way does the dragonfly symbolize the organization’s mission?

A: The dragonfly is a small insect that flies extremely fast. It exemplifies the virtues of living life to the fullest by being a symbol of strength, survival and victory! With time of the essence, The Dragonfly Foundation is acting quickly to bring comfort and joy to children and young adults living with, and sometimes dying of, cancer. Until there is a cure, we can’t forget to care.

 

WHAT MAKES THE DRAGONFLY FOUNDATION SPECIAL?

Q: What is “The Dragonfly Difference?”

A: The Dragonfly Foundation holds a unique place in the landscape of non-profit organizations. We call this The Dragonfly Difference:

— We serve young cancer and bone marrow transplant patients and their families. Eligible patients range in age from birth to age 30, and remain Dragonflies from their date of diagnosis until they are at least five years past treatment/BMT. (If the patient joins Dragonfly at the end of their five years or at the age of 30, the patient and their immediate family will be a Dragonfly family for one year from their registration date.) We understand that even though treatment may end, the post-traumatic stress of treatment, the challenges of side effects from treatment and the anxiety of side effects and recurrence continue to challenge families for years to come.

— We support Dragonflies while the patients are in hospital and at home — for the duration of their term with The Dragonfly Foundation.

— We support the Hospital financially and with programmatic enhancements. We have been credited with dramatically impacting patient care.

— We provide multiple, ongoing event opportunities, as well as provide distractions, gifts and entertainment, and community connections. The patients, as well as their siblings/offspring and parents/caregivers experience isolation, loneliness, fear and anxiety related to the diagnosis and treatment of and/or recovery from cancer or a bone marrow transplant. While only one person is receiving treatment, all affected benefit from our C.A.R.E.

In many cases, the fundamental needs of a family are left to one organization and quality-of-life support to another. TDF provides comprehensive C.A.R.E.

We understand that time is of the essence; many of the patients we serve may not have a tomorrow. That’s why we make patients and families smile. Every single day.

Q: What services and opportunities do we offer Dragonflies and partner hospitals?

A: The programs we offer may vary by location, please review our Programs Brochure to review the services offered by the main branch of The Dragonfly Foundation. Programs will be added in other cities as resources allow and as need requires.

Q: Why is the Dragonfly Foundation valuable?

A: All hospitals are facing budget challenges. With the help of The Dragonfly Foundation, and other non-profits and sponsors, hospitals can continue to focus resources on doing what they do best: curing and healing their patients. Patients/families, in turn, can have the benefit of a caring, compassionate, and responsive support network.

Q: What kinds of support do you provide to Dragonfly Families outside of the hospital?

A: The Dragonfly Foundation works to create smiles and good memories for patients and families, between appointments or scans. We also try to create opportunities for families to meet and “hang out” with other families who are traveling the same journey. (In fact, we have even had a couple of kids meet at our event and go on a date!) They can do this at our patient/family spaces or at our events.

In Cincinnati, we hold an average of five small- to large-scale events A WEEK for our families.

Q: What types of support are NOT offered by The Dragonfly Foundation?

A: We do not provide financial assistance or support in the traditional sense, nor do we provide medical advice or emotional, financial or psychological counseling. Being a new organization with limited resources, we try to do what we can, when we can, as often as we can, keeping in mind that our mission is to provide comfort and joy.

WHO ARE DRAGONFLIES AND DRAGONFLY FAMILIES?

Q: What is the age range of the patients served?

A: We support eligible patients from birth to age 30, until they have been at least five years past treatment or until the patient reaches 30 years of age.

Example 1: A newly diagnosed 7-year-old patient requiring three years of treatment would remain a Dragonfly until they are approximately 15 years old, assuming they had no evidence of disease or significant disease- or treatment-related challenges for five years following treatment/post-BMT. (Age 7 + 3 years of treatment + 5 years until “clean” = 15 years old)

Example 2: A 30-year-old newly diagnosed patient would remain a Dragonfly for one year from their registration date. (Age 31)

Q: Do you serve all blood disease patients?

A: While The Dragonfly Foundation would like to support all patients, regardless of illness, we must recognize the limited resources that are available. Our initial goal when forming The Dragonfly Foundation was to provide support to all hematology and oncology patients. However, we have come to understand that blood diseases are so numerous, prevalent and long-lasting that supporting this category of disease alone – in the way we provide services to cancer patients — would bankrupt our organization.

In November 2013, we took steps to clarify our mission to include cancer or bone marrow transplant patients (and their families), while working to enhance quality of life programs of inpatient hematology and oncology departments.

Q: What is a Dragonfly Family?

A: A Dragonfly Family has at least one child or young adult (up to age 30) who is being or who has been treated for cancer or a bone marrow transplant at a partner hospital. If the patients are parents themselves, we include their immediate family (children/partner). We accept ALL eligible cancer or bone marrow transplant patients, regardless of location of permanent residency, race, religious affiliation or family/patient income. Patients and their families remain Dragonflies until they are five years past their treatment/BMT.

Q: Why is it important to support the entire family unit during treatment and beyond?

A: Patients, siblings and parents/caregivers experience isolation, loneliness, fear and anxiety related to the diagnosis and the physical, emotional, and financial costs of treatment. While only one person receives treatment, all are affected. That’s why we want the patient and their immediate family to benefit from our C.A.R.E.

Q: What hospitals can refer patients to The Dragonfly Foundation?

A: Please see this list of current partner hospitals.

Q: What is the procedure required to become a Dragonfly Family?

A: Families with eligible patients at a partner hospital receive a Dragonfly Registration Form from the hospital’s Social Work Department. They complete and return the form to their social worker. After receiving the registration form from the hospital, Dragonfly follows up with the family within 24 hours.

Q: What information is collected as part of the application?

A: The registration form asks for names and ages of children, address (local and home), phone number/email and diagnosis and treatment information. We also ask about the patient’s interests (i.e., (hobbies, sports/teams, heroes/idols, type of music, dreams/goals, TV shows, etc.) and try to identify items and experiences that bring the patient comfort and joy both in and out of the hospital. We also ask about what kinds of activities the family likes to do together. All questions are open-ended.

Q: Do you provide support to patients who do not register with Dragonfly?

A: Yes. We provide gifts and distractions to patients through our partner hospital’s Social Work and Child Life Departments. (Programs vary by location.) For example, we have provided laptops/electronics, toys, tickets, gift cards, Sky Panels and care packages for the hospital to distribute and use.

Q: How do you know when a patient or family needs emotional support?

A: We maintain open lines of communication with our Dragonfly Families. Information shared during phone calls, emails, texts, events and postings on private social media pages managed by Dragonfly helps us understand when a patient, sibling or caregiver is under severe emotional, psychological or physical distress. In addition, privacy releases signed by the family allow hospital staff to notify our organization when they identify a need.

PATIENT AND FAMILY EVENTS

***EVENTS ARE CURRENTLY OFFERED ONLY IN CINCINNATI. WE LOOK FORWARD TO OFFERING EVENTS TO PATIENTS/FAMILIES TREATED IN CHICAGO.

Q: How many events do you hold for patients/families in a year?

A: The better question is “How many events do we hold in a WEEK?” In Cincinnati, we hold an average of five small- to large-scale events a week for our families. This includes: concerts, movie outings, spa days, amusement park events, picnics, sporting events and more! Our patients’ health status changes from moment to moment during treatment. If patients and their families are unable to attend an event, there is always another one right around the corner.

***We look forward to offering events to patients/families in/around other partner hospitals.

Q: What kinds of events can patients and families attend in Cincinnati & Dayton, OH?

A: Our events are local to Cincinnati and Dayton Children’s Hospitals. Events include professional and collegiate baseball, football, hockey, and soccer games; concerts, musicals and plays; exhibitions; and trips to the local amusement park, zoo, and aquarium. We also host annual and monthly events at The Landing and other locations, and have arranged for special meet and greet opportunities. All of these events are free to our Dragonflies.

Q: How has The Dragonfly Foundation connected patients with celebrities?

A: We have held three concerts and arranged for hundreds of greet events with local and national entertainers, celebrities and sports figures, at the Landing, at event venues, and at some of our partner hospitals:

  • Musicians and celebrities, including: Keith Urban, Nick Lachey, Vanessa Minnillo, Daughtry, 3 Doors Down, Joe Jonas and Miranda Cosgrove from Nickelodeon, MercyMe, Idina Menzel and Livvy Stubenrauch from the movie “Frozen,” Chalk FarM, Rachel Sage, “Man vs. Food” television star Adam Richman, Black Keys, Ryan Broshear, Shock from the TV show “Electric Company”, and many more
  • Sports figures, such as: Marty Brennaman (Hall of Fame broadcaster), professional baseball, football and soccer players, Harlem Globetrotters, collegiate basketball, baseball, hockey, soccer and volleyball teams, dance and cheer teams, NASCAR driver Jimmie Johnson, Advance Auto Parts Monster Truck Jam drivers
  • Disney characters, Ringling Bros. and Barnum & Bailey Circus and Cirque du Soleil performers

Q: How has The Dragonfly Foundation been able to manage so many patient/family events?

A: We use a system called Send Word Now to inform families of events. Send Word Now is a service commonly used by schools, universities and others to notify people about snow emergencies and critical messages. However, we use it to call, text and email families when we have ticket opportunities available – even at the last minute.

Q: What is Dragonfly’s ticket policy?

A: Our intent is for the patient and family to have a memory moment: a time when they can be together and enjoy something special – alone or with other families. We are grateful to our sponsors and volunteers for making this possible. Our ticket policy reads:

1) If your family is not particularly interested in attending an event OR has been to Dragonfly event in the last several months, please identify yourself as a “Backup Family” – unless your family is in desperate need of joy due to the patient’s medical condition. (After all, that’s why we’re here!) Our Ticket Hotline Number is 513/494-6474.)

2) In the event the patient and/or ticket holders are unable to attend the event, unused tickets MUST be returned to The Dragonfly Foundation, unless approved by The Dragonfly Foundation. To return tickets, please call/text Ria Davidson immediately at 513/452-3359. With many events having a wait list, please let other patients and their siblings experience joy. Not returning tickets without medical documentation or advance notice may result in jeopardizing future ticket opportunities with The Dragonfly Foundation.

3) A patient must attend the event, unless approval has been granted in advance of the event. (We will try to accommodate a “parents night out” when possible, depending upon demand.)

4) Only immediate family members may attend an event, unless special accommodations and approvals are made in advance. Tickets CANNOT BE GIVEN AWAY OR SOLD UNDER ANY CIRCUMSTANCES.

5) Please be considerate and arrive at the agreed-upon time to check in with the on-site Dragonfly volunteer. Being more than 20 minutes late to meet a volunteer or not showing up/not calling are considered policy violations and may jeopardize future event opportunities. We will NOT leave tickets at Will Call.

6) Please remember that we are guests of our organization and our sponsors. Items in the suite do not belong to The Dragonfly Foundation. Removal of these items is considered theft.

7) Disruptive, aggressive, uncooperative or greedy behaviors, inappropriate language, and/or damage or theft will NOT be tolerated and will result, at a minimum, in the loss of Dragonfly event privileges. Depending upon the violation, your child/children and family may be removed from all Dragonfly programs.

8) We will not be held responsible if tickets are lost or stolen, or if the event is cancelled. In the event of cancellation, your family will be given priority status at the next available opportunity.

9) Patients/families must be in good standing with the organization to benefit from our activities.

Our intent is for the patient and family to have a memory moment and to be distracted from pressures associated with cancer and blood diseases. We want these events to be a time when families can do something special — together. We are grateful to our sponsors and volunteers for helping to make all that we do possible.

 

“THE LANDING” BY THE DRAGONFLY FOUNDATION

**THIS FACILITY IS CURRENTLY LOCATED ONLY IN CINCINNATI. WE HOPE TO SOMEDAY OPERATE A SIMILAR FACILITY IN EVERY LOCATION WE SERVE.

Q: What is “The Landing” by The Dragonfly Foundation?

A: “The Landing” is a place in Cincinnati, OH where Dragonflies and their families can find comfort and experience joy. The 6,000 sq. ft. facility (donated by Casto) includes a video conference area with a 50” flat screen tv/Mac computer, living room spaces, toys and games, a relaxation space for adults, a private young adult room with video game systems and a ping-pong table, craft areas and a meeting space with conference table. The property also has more than than 1500 sq. ft. of storage for our toys, gifts, care package items.

We are “building joy, one brick at a time.”

Q: How do families and the organization use “The Landing”?

A: The most exciting reason for Dragonfly Families to visit our space is to connect with other Dragonfly families. Here are 49 other reasons!

“I AM STILL ME”™

Q: Why did The Dragonfly Foundation develop this hair loss and public awareness program?

A: Patients who undergo hair loss experience significant emotional trauma and loss of identity. This is made even worse when some members of the public stare, point or make rude and/or uninformed comments. The Dragonfly Foundation’s “I AM STILL ME” Hair Loss & Public Awareness Program can help patients and their families face the challenges of treatment and hair loss, while raising public awareness about the trauma of treatment.

We believe this program will reduce trauma and provide patients and their families/caregivers with a greater sense of self and community during treatment. We hope it will encourage patients to be strong in the face of adversity and help them understand that they are not alone.

Q: What does the program currently include?

A: We currently offer our Dragonfly patients one of two blue t-shirt designs: one that reads “I Am Still Me” and another that says “Made You Look.”

Our “I Am Still Me” Care Packages, which are partially sponsored by Claire’s, includes: tattoo markers, hair coloring (for before they lose their hair), head coverings, wigs, hats, tiaras, a pillow case, lint brush, sunscreen, stick on jewelry, and more. It also includes our  I Am Still Me (TM) Hair Loss Book.

 

BEADS OF COURAGE™

Q: How does this program help patients?

A: After a patient becomes registered in the program, they are given a bead after they complete a specific procedure or overcome an obstacle or challenge. The Program is a “resilience-based intervention,” which means that it gives a patient a “symbolic bead” for making it through treatments. Patients tell their story using colorful beads (e.g., chemotherapy = glow-in-the-dark bead) as meaningful symbols of courage that commemorate milestones they have achieved along their unique treatment path.

Q: Did The Dragonfly Foundation create the Beads of Courage Program™?

A: No, but we introduced and have continued to sustain the program at Cincinnati Children’s Hospital’s Cancer & Blood Diseases Institute. We also plan to bring the program to other partner hospitals. We have told Beads of Courage that where we go, they go.

HOW CAN I SUPPORT THE DRAGONFLY FOUNDATION?

Q: What can I do to help?

A: Everyone has time, talent, resources and connections that can help The Dragonfly Foundation. Please tell people about us! Someone you know will want to volunteer, someone else will know a business that might sponsor an event or give us an auction item, another may know someone who knows a celebrity and others may want to donate items we need for our kids, our families or our organization. Please begin your involvement with our organization by subscribing to our newsletters via our website, Dragonfly.org. There, you can register to receive our newsletters and emails specific to your interest in our organization.

Q: How can potential corporate partners become involved?

A: There are many ways to support The Dragonfly Foundation. For more information, please click here.

Q: Can I volunteer?

A: Please do! We are a volunteer-driven organization. If you have time to work from home or if you want to volunteer at our office or at one of our events, please let us know by registering here.  If you have questions, please email us at info@TheDragonflyFoundation.org.

Q: Where can I find information about upcoming events?

A: Please visit our event calendar.

Q: What can I donate?

A: We LOVE gift cards! Please donate gift cards valued at $5 or more for gas, iTunes®, Amazon®, national chain restaurants and coffee shops (i.e., Starbucks®), stores (i.e., GameStop®, Target®, and Wal-Mart®) and MasterCard®, Visa® and American Express® cards. Gifts cards are wonderful because they take up very little storage room and can be easily mailed with two stamps! Small denominations can be combined to allow Dragonflies to get gifts or items they want or need. (Many families can’t afford the gas required to visit their children in the hospital or even go to treatment appointments.)

We also will take new, unwrapped toys, DVDs, video games, game systems, etc. Please consider purchasing on Smile.Amazon.com and selecting Dragonfly as the beneficiary. A portion of your purchase will be donated to The Dragonfly Foundation.

Our website has a list of urgent and on-going needs, as well as a Products Page where you can purchase or sponsor items.

Q: Will I have an opportunity to interact with Dragonfly Families?

A: You may, depending on the type of role you have with our organization. Please know, however, that the closer you get to our Dragonflies and/our resources, the more protective we are. We take the health, safety and emotional well-being of our families very seriously – they are going through a difficult time and we do not want to add to their burden. We also do everything we can to protect our resources and the privacy of our supporters.

Q: Can I help in other ways?

A: Absolutely! We need people to host fundraisers and informational meetings, deliver items, manage our inventory, plan, manage and staff events, obtain sponsors and auction items, enter data, and so much more. Please consider subscribing to our Volunteer Newsletter when you register on our website. We also welcome you to visit our Facebook pages or follow up on Twitter or Instagram.

Q: Can I involve my children in volunteering?

A: Yes, in certain situations. Be sure to review our Volunteer Policy for Minors to learn more about how kids may and may not get involved. It is important to protect your child’s health (emotional and physical) and safety, as well as our Dragonflies.

Q: What is involved in applying to be a volunteer?

A: Volunteers are not only involved with helping us raise awareness, are often trusted to help us with inventory management, fundraising and staffing of patient/family events. To protect our Dragonflies and our organization, we require background and criminal checks for screening and placement purposes. We also require that volunteers go through an informational session about our Volunteer Protocols and a small group interview. To register to volunteer, please visit this page, read though it and click the image at the bottom.

 

What is The Dragonfly Foundation’s most important message?

We have no time to waste.