As a nonprofit, volunteer-run organization, we rely on your donations to provide emotional, educational, and support services free of charge to patients, caregivers, and health care providers. For more information about any of the opportunities below, contact info@hopeforhh.org.

 

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In Honor or Memory: You can even make your donation in honor of a birthday, anniversary, graduation, wedding or other special occasion or in memory of someone. The honoree or memorial family will receive an acknowledgement of your generosity.

Corporate Matching

Corporate sponsorships/Workplace Giving/Matching Gifts: Become a corporate sponsor. Or check with your company for information on workplace giving and/or matching gift programs.

Local Fundraisers

Organize an event in your community including bake sales, lemonade stands, car washes, walks, golf tournaments, theme days, concerts, and dinner parties. Send us pictures and information about your event and we'll post your story to inspire others. Check out previous community member fundraising events:
M-O-OVING THRU’ THE MUD WITH LANDON

ACCOMPLISHMENTS

Thanks to the generosity of our supporters, Hope for HH has been able to make a huge difference in the lives of individuals and families affected by the many challenges associated with this rare condition. Your donation, in any amount, helps us to continue to increase awareness, provide support and invest in the necessary research to find better treatments and a cure.

2015

• Dr. Helen Cross is appointed Chairman of the Hope for HH Medical Advisory Board, 2015-2016
• National Epilepsy Walk in Washington DC April 2015
• 4th Annual M-o-oving Thru’ The Mud fundraiser is scheduled for July 2015
• 2nd Annual HH Family Conference in Houston, TX, July 2015

2014

• The television program “The Doctors” features a story about Dr. Peter Nakaji and 2 HH patients
• The Rare Epilepsy Network, including Hope for HH, is awarded a $1M grant to launch a rare epilepsy database/registry
• Rare Epilepsy Network launches and begins recruiting HH and other rare epilepsy patients
• The 3rd Annual M-o-oving Thru’ The Mud fundraiser raises $25k thanks to Board member Wendi Tipps and her incredible committee and community
• HH families and friends rally to organize awesome fundraisers for HH including Eli Donn’s Quarter Auction
• Genzyme employees run the Boston Marathon in honor of HH patients
• Hope for HH team comes in 3rd place at the National Epilepsy Walk for Most Walkers
• Professional medical Journal “Epilepsia” publishes Epilepsy Vol. 55 including Hope for Hypothalamic Hamartomas – Co-Founders Stories
• Hope for HH adds “Amazon Smile” to its online fundraising partners – where a percentage of each Amazon purchase supports Hope for HH
• Hope for HH attends AES

2013

• Hope for HH funds its first research project with Dr. Jai Wu at Barrow Neurological Institute (BNI), Phoenix, AZ
• Hope for HH partners with Duke Univeristy, BNI and Univeristy of Melbourne on an HH specific genetic sequencing project
• Hope for HH helps organize the 2nd International Symposium for Hypothalamic Hamartomas (Marseille, FR) bringing together 35+ of the world’s foremost HH neurosurgeons, neurologists, epileptologists, neuropsychologists
• Hope for HH hosts the first International Family event as a part of the Symposium in Marseille
• Dr. Craig Miller testifies at the Curing Epilepsies 2013: Pathways Forward Conference
• Hope for HH partners with Epilepsy Foundation and other rare epilepsy organizations to apply for a $1M PCORI grant
• Board Member Ilene Miller is appointed to National Institute for Neurological Disorders & Stroke Advisory Board Council, representing HH, epilepsy and the voice of hundreds of other rare neurological diseases
• HH families and friends rally to organize awesome fundraisers for HH including Our Hope Phoenix, Quilters Bee, and Belt Buckles
• Hope for HH adds online fundraising partners Good Shop, Good Dining, Good Search
• Hope for HH attends AES
• Hope for HH comes in 3rd place at the National Epilepsy Walk for Most Walkers
• M-o-oving Thru’ The Mud fundraiser raises $20k
• Wendi Tipps joins the Hope for HH Board of Directors
• Dr. Rekate is appointed Chairman of the Hope for HH Medical Advisory Board, 2013-2014

2012

• Hope for HH Blog launches
• Inaugural M-o-oving Thru’ The Mud fundraiser raises $15k
• 1st Annual HH Symposium for Patients & Caregivers, Phoenix, AZ
• ABC Nightline chronicles the stories of the Dysart and Rocha families as they undergo laser surgery
• Hope for HH invites new Medical Advisory Board members Drs. Daniel Curry (Texas Children’s, TX), John Fulton (BNI, AZ), Jeffrey Rosenfeld (Monash University, AU)
• Dr. Rekate launches the Hypothalamic Hamartoma Center at The Cushing Neuroscience Institute at North Shore-LIJ Health System, NJ.
• Board member Emma Kane testifies at the XX Stereotactic & Functional Neurosurgery Conference (Marseille, FR) on behalf of HH families and patients worldwide
• Institute of Medicine Releases: Epilepsy Across the Spectrum: Promoting Health & Understanding including testimony from Board members Lisa Soeby & Ilene Miller
• Neurology Now interviews Board member Lisa Soeby and publishes article “Too Rare for Research”
• Epilespy.com with Dr. Joe Sirven interviews Board members Lisa Soeby & Ilene Miller for program Hallway Conversations
• Board Member Ilene Miller testifies before the Interagency Epilepsy Working Group Meeting for Vision 20/20
• Board Member Ilene Miller testifies at NINDS Nonprofit Forum representing Hope for HH & Vision 20/20

2011

• Texas Children’s Hospital is first to use state of the art Laser Ablation Surgery on HH patients
• Television program Grey’s Anatomy airs a story about an HH patient, Put Me In Coach, 10/27/11
• Hope for HH partners with National Organization for Rare Diseases
• Seizure Tracker adds HH and gelastic seizures as a seizure type to its seizure tracker software after recommendations by Hope for HH
• Board Members Lisa Soeby & Ilene Miller testify at Institute of Medicine Committee on the Public Health Dimensions of the Epilepsies (March & June 2011)
• Hope for HH participates in Partnering to Advance Therapeutics for Neurological Disorders (June 2011)
• Hope for HH participates in Vivent Gives Back - awareness campaign
• In an effort to raise awareness, Hope for HH adds links to: National Intistute of Neurolgoical Disorders & Stroke, Cure Epilepsy, Pediatric Endocrinology Society, American Epilepsy Society
• Letter of Introduction regarding Hope for HH’s advocacy efforts is sent to 100 National Association Epilepsy Center nationwide
• 50+ people walk for HH at the National Walk for Epilepsy in Washington D.C.
• HH flyers distributed via NORD at American Academy of Pediatrics (October 2011).
• Hope for HH joins Vision 20/20 - a national epilepsy task force committed to eradicating seizures
• Epilepsy Foundation adds HH specific content to epilepsyandmychild.org.
• Hope for HH hosts a Social Networking Group at the annual American Epilepsy Society meeting (December 2011)
• Hope for HH Medical Advisory Board welcomes Dr. Harold Rekate (Chiari Institute)

2010

• Hope for HH Launches Inaugural Medical Advisory Board and appointed Dr Jack Kerrigan as Chairman.
• Hope for HH website launches along with HH Family Forum
• Hope for HH MAB works on an international definition of HH
• Hope for HH attends American Epilepsy Society meeting
• Hope for HH attends first Vision 20/20 meeting
• Emma Knott joins Hope for HH Board of Directors

2009

• Incorporated Hope for Hypothalamic Hamartomas as a 501©3 nonprofit organization
• Lisa Soeby & Ilene Miller meet on a National Walk for Epilepsy in Washington DC and envision a Foundation. They invite Erica Webster and Dawn Cerven to join them as Board members and the original Hope for Hypothalamic Hamartomas Board of Directors was born.