Sharing Your Experience with DIPG DMG
Your experience, gaps you found in needed services, and the need for curative treatments are invaluable pieces of information only a DIPG DMG family can provide. Likewise, the support you found helpful for your family will be just what the next family needs to know. When you are ready, it’s time to share your story and your ideas to make a better way.
It is absolutely understandable that you may be angry a cure was not found in time to save your loved one. You know the horror of the statistics you read just after diagnosis and you can likely recall all the nights you lie awake wondering what you were missing, what more you could do, where you should turn for a cure, a better trial, for more time. Try as you might to keep it locked away in your mind, you remember your loved one suffering. Yet, you also work hard to remember fondly the way he or she truly lived. Maybe you even tear up when you meet another parent who has lost their child because it hurts deeply to know anyone else carries the pain you feel.
You can channel that pain into purpose. There is much work to be done for DIPG DMG and the families it impacts. Benjamin Franklin said, “justice will not be served until those who are unaffected are just as outraged as those who are affected.” When you tell your story to those who have not yet battled DIPG DMG and let someone see a glimpse of your pain, you will make the circle bigger. You invite into the circle of DIPG DMG advocates those who can bring change. This might be a researcher who has been working on another cancer, a policy maker able to advance DIPG DMG as a priority, a funder ready to donate or invest in DIPG DMG research , or a volunteer ready to reach out and support DIPG DMG families.
Through your story you inspire those who can lend help to join our fight. At the Tough2gether Online Community you will find areas to connect with others who have similar interests.
Here are a few examples of opportunities to advocate you might find rewarding:
- Talk to lawmakers or government agencies about the need to increase research dollars for DIPG DMG. Many foundations including Smashing Walnuts -Ellyn Miller, Kids v. Cancer - Nancy Goodman, St. Baldwick’s - Sara Millburg, ACCO - Ruth Hoffman, Rally! Foundation - Dean Crowe, NBTS - David Ahrens, and PBTF - Mike Henry have active advocacy agendas. You can join these working groups or learn more within the Tough2gether Online Community in the Advocacy Forum community.
- Join or lead support groups or share your knowledge within support chats to mentor families, including those in the Tough2gether Online Community or start your own.
- Help raise funds for needed DIPG DMG research of family support with any DDRFA member, Live Brave 2gether member or other foundation supporting DIPG DMG, Pediatric Brain Cancer or Childhood Cancer.
- Attend the BrainStorm Summit or other conferences for advocates, researchers and poilcy makers and participate in discussions to make sure your voice is heard. Choose to lead a panel or discussion on a topic of interest to you.
- Share your experience to help establish better best practices by joining with others to raise these important issues like hospice care, financial toxicity, or sibling needs for example.
- Lead a faith based support group at Tough2gether Online Community.
- Volunteer with Gift from a Child to walk with families through the tissue donation decisions as a navigation partner.
- Use social media, your art or writing to provide a window into the world of DIPG DMG and share the hope we feel that changing DIPG DMG as we know it can be achieved.
Most of all, never allow others in your life to silence your voice, to make you “put behind you” your experiences. Never allow anyone to make your experience feel so rare it is not relevant to others. For it is the voices of families just like you who have motivated every single improvement available to families diagnosed today. The DIPG DMG Community is ready to hear from you too.