2022 Year in Review

e p o H s ' r e t n u H 2022

HUNTER KELLY Because of Hunter Our lives are forever changed. His bravery taught us to be bold. His courage made us strong. His humility inspired us. His love changed us. And because of God's amazing grace, our Love endures forever. Jill Kelly

TABLE OF CONTENTS About Us HDHPC 08 01 Family Programs Our Mission 02 09 Our Logo Living with LD 10 03 Family Care Our Programs 04 11 Hope ~ Life Wall of Fame 05 12 Our Podcast Wish Gift 06 13 Retreat Equip Exchange 07 14

TABLE OF CONTENTS CONTINUED Inspiration 15 Family Symposium 16 Medical Symposium 17 Newborn Screening 18-19 LD Care Network 20-21 Financials 22

s u t Hunter’s Hope was established in 1997 by Pro Football Hall of Fame u Member and former Buffalo Bills Quarterback, Jim Kelly and his wife Jill, after their infant son, Hunter (2/14/97—8/5/05) was diagnosed with Krabbe Leukodystrophy, an o inherited fatal nervous system disease. When the Kellys welcomed their only son, Hunter, into the world on February 14, b 1997— Valentine’s Day and Jim’s birthday— they knew he was destined for something extraordinary. a 01

Hunter’s Hope Foundation was established to address the acute need for information and research with respect to Krabbe Disease and related Leukodystrophies. In addition, our mission is to strive to support and encourage those afflicted and their families as they struggle to endure, adjust, and cope with the O demands of these fatal illnesses. Accordingly, our mission is four-fold: U To broaden public awareness of Krabbe Disease and other Leukodystrophies thus R increasing the probability of early detection and treatment. To gather and provide current, functional M information and service linkages to families of children with Leukodystrophies. To support research efforts that will identify I S new treatments, therapies, and ultimately, a cure for Krabbe Disease and other S Leukodystrophies. To establish an alliance of hope that will I nourish, affirm, and confront the urgent need O for medical, financial, and emotional support of family members and those afflicted with Leukodystrophies. N Among the essential goals, founders Jim and Jill Kelly, seek to inspire an appreciation of all children and express a thankful heart towards God for these precious gifts of life. These bedrock values are categorically and vigilantly expressed throughout all of the Foundation’s programs and activities. 02

O The message of the Hunter’s Hope G logo is at the core of the Foundation's mission and all we do. O It is green representing Hope. L It is a candle flame in a heart, meaning the light of Christ in our hearts. R “For God, who said, ‘Let light shine U out of darkness,’ made His light shine in our hearts to give us the O light of the knowledge of the glory of God in the face of Christ.” 2 Corinthians 4:6 03

s Hope ~ Life m Family Programs a Newborn r Screening (NBS) Leukodystrophy g Care Network (LCN) o r P 04

05 HOPE ~ LIFE Podcast Retreat Hunter's Day of Hope and Prayer for Children

t s a c The Light Your Heart With Hope podcast is founded on the belief that our stories matter... d not just in the here and now, but for eternity. We share testimonies of hope that point to the greater hope found in Christ. Our prayer is that you will be o encouraged to share your own story. No matter what you've walked through, you have a story to share. One that can make a difference today for someone who is fighting for their tomorrow. p 06

RETREAT 07 YOU & YOUR STORIES MATTER Hunter's Hope hosted a Weekend Retreat at the Kelly's Hunter's Haven Lodge in Ellicottville, NY, attended by 14 of our Podcast Episode Guests. It was an unforgettable time together, filled with love, rest, fun, and forever bonding. "This Retreat was amazing! I am forever changed. I thanked God for this weekend, for all the women, for bringing healing to my heart and my mind." ~ Becky "Thank you so much for everything! You have made me feel like I belong somewhere. I feel so blessed to have had this opportunity." ~ Kelly

08 HUNTER'S DAY OF HOPE AND PRAYER FOR CHILDREN This is a day of hope and joy for all children. Our mission says that we seek to inspire an appreciation of all children and express a thankful heart towards God for these precious gifts of life. These values are expressed throughout all of the Foundation’s programs and activities, especially Hunter's Day of Hope and Prayer for Children. Although due to the pandemic, in 2022 we were not able to meet together with families at our annual event, we were able to share our love through giving hundreds of our bears away.

FAMILY PROGRAMS Living with Leukodystrophy Family Care Wall of Fame Wish Gift Equipment Exchange Symposium 09

y LIVING WITH h p o r Families share their stories every day on social t media. Their voices are unique, informative, and important. They give a glimpse into the joy of life s when caring for a child living with a Leukodystrophy. y Hunter's Hope created a new web page dedicated to these families. Link to the page is here. d o k u e l 10

FAMILY CARE 11 BUCK FAMILY In 2022, over 906 cards and 72 care packages were sent to affected children and their families through our Family Care program. These cards and packages are sent to celebrate a birthday, in remembrance of a child’s heaven date, to welcome a new family to Hunter’s Hope, or just to let someone know we are praying for them during a challenging time.

WALL OF FAME 12 BRIDGER PENNEY CAMDEN RENEGAR HUNTER BELYEW ANGELA DUBON The Wall of Fame gives families an opportunity to honor their loved ones. These are just a few of the children added to the Wall of Fame this year.

WISH GIFT 13 ROWDY ROBINSON Leukodystrophy families face tremendous stress and financial hardship as they care for a child with a Leukodystrophy. Hunter’s Hope assists Leukodystrophy families so they can focus on what matters most – caring for their child. In 2022, Hunter’s Hope fulfilled 4 Wish Gifts totaling over $94,000.

EQUIPMENT & SUPPLY EXCHANGE 14 Children affected by a Leukodystrophy require equipment and supplies that can cost thousands of dollars. Insurance companies do not always cover the cost and a lot of families can’t afford to purchase them on their own. EVERLY O'NEAL This program facilitates the donation of equipment and supplies from families who no longer need them to bless other families in need. Hunter’s Hope pays for the equipment to be shipped from the donating family to the family in need. In 2022, Hunter’s Hope provided over $12,000 worth of equipment and supplies to affected families.

Inspiration 15 As a caregiver, you may face incredible stress: financial, emotional, and physical. Yet, in the midst of i t a l l , G o d i s g e n t l y calling you to come t o H i m . Mary spoke at our Family Symposium and t h e n f o l l o w e d u p w i t h a customized course for our families, based on her book. Hunter's Hope was able to cover the cost f o r b o o k s a n d t h e course. " I j u s t w a n t t o t a k e t h i s o p p o r t u n i t y t o s a y a h u g e THANK YOU to Hunter’s Hope for providing the Heart of the Caregiver Master Class with Mary Tutterow! I h a d n o i d e a t h i s b o o k a n d c l a s s w o u l d i m p a c t m e s o much. I have a whole new perspective on caregiving f o r m y d a u g h t e r L a u r a . " ~ D a r l e n e 10 10

FAMILY 16 SYMPOSIUM The 2022 the Hunter’s Hope Family Symposium was held virtually and brought together over 60 Leukodystrophy families from all over the world. Families had the opportunity to learn more about the latest treatments and clinical trials, hear updates from the newborn screening community, and learn more about accessing expert medical care through the Leukodystrophy Care Network. We were blessed to share a Day of Hope & Inspiration for Families with powerful and impactful speakers. Families also learned of resources available to them through Hunter's Hope Family Programs. It was a great week filled with HOPE! We look forward to continuing to provide virtual access to the Symposium in the future. We are so thankful for the technology that makes this possible. We are excited to have families join us virtually for future Symposiums who might not be able to travel to New York to attend in person. You can learn more about this year’s family symposium on the Hunter’s Hope website - click here.

MEDICAL SYMPOSIUM 17 The 2022 Hunter’s Hope Medical Symposium welcomed nearly 200 medical and scientific professionals to discuss the most current advancements in Leukodystrophies. The first day of the meeting focused on Newborn Screening (NBS) for Leukodystrophies and featured talks from state labs, and various NBS and Disease experts who are dedicated to ensuring the best possible outcomes for children identified through their state’s NBS program. The second day of the meeting included presentations from several industry partners who are currently working on improving the potential treatment options for Leukodystrophies. The medical meeting concluded with updates from our Leukodystrophy Care Network’s Clinical Practice Guidelines’ lead authors. These guidelines will help improve clinicians’ understanding of these diseases and the treatment provided to patients. The meeting was filled with hope – hope for early detection and treatment through Newborn Screening, hope for new and better treatment options on the horizon, and hope for accessible expert care for all families impacted by a Leukodystrophy. You can view the presentations from this year’s medical symposium on the Hunter’s Hope website by clicking here.

NEWBORN SCREENING HUNTER KELLY TYGH DEROSSETT Newborn Screening (NBS) is a public health program that screens shortly after birth for rare and potentially fatal diseases. And, for a growing number of Leukodystrophies, NBS can provide a chance for lifesaving treatment. 18

FEDERAL ADVISORY COMMITTEE In 2022, we saw the fruition of many years of research, 19 advocacy, and coordinated efforts with our team of experts when the federal Advisory Committee on Heritable Disorders in Newborns and Children voted unanimously to complete an evidence review on Krabbe Disease. In early 2023, the committee will vote to determine if Krabbe should be included in the federal Recommended Uniform Screening Panel which will greatly accelerate our efforts for nationwide Krabbe NBS, saving countless lives. KRABBE NBS ADVISORY COUNCIL Because Hunter’s Hope is committed to ensuring that babies with a positive NBS for Krabbe have the best outcomes possible, we continued to lead the Krabbe NBS Advisory Council. This council of leading experts, as well as NBS and medical professionals, meets monthly to review cases and discuss new developments in Krabbe NBS. Membership is open to any clinician or scientist in states currently screening for Krabbe Disease (KD) or in the process of implementation. We also published Krabbe Newborn Screening: A Family Guide to provide detailed information for families with a baby who screened positive for Krabbe. Visit our website here for more information about our other NBS initiatives such as advocacy efforts and supplemental NBS.

LEUKODYSTROPHY CARE NETWORK The Leukodystrophy Care Network (LCN), established in 2015, is a network of medical providers, hospitals, Leukodystrophy organizations and affected families. The LCN provides innovative therapies, treatment options, expert care, and information to families impacted by Leukodystrophies. 20

STEERING COMMITTEE The LCN is led by our Steering Committee, made up of Leukodystrophy families, to ensure that the patient experience is at the forefront of all we do. We continue to coordinate the completion of LCN Clinical Practice Guidelines, to provide expert standards of care for the medical treatment of Leukodystrophy patients. LCN CENTERS Currently, we have 12 Certified LCN Centers across the U.S. Each center has a nurse practitioner or nurse serving as its LCN Care Coordinator, to ensure that every family has the multidisciplinary, coordinated care they deserve. Ann & Robert H. Lurie Children’s Hospital of Chicago Children’s Healthcare of Atlanta Duke Children’s Hospital Golisano Children’s Hospital at University of Rochester John R. Oishei Children’s Hospital of Buffalo Kennedy Krieger Institute Lucile Packard Children’s Hospital at Stanford Massachusetts General Hospital Nationwide Children’s Hospital Primary Children’s Hospital, Utah UC Davis Health System Weill Cornell Medicine 21

2021 FINANCIALS REVENUES GENERAL DONATIONS $ 656,989 INVESTMENT INCOME $ 23,512 GRANTS $ 171,287 GRANT - PPP FORGIVEN $ 64,578 TOTAL $ 916,366 EXPENSES G & A $ 58,551 FUNDRAISING $ 76,102 EDUCATION | NBS $ 173,359 FAMILIES | LCN | RESEARCH $ 433,437 NET ASSETS EOY 2021 $ 1,156,155 22