WELCOME PATIENTS & CAREGIVERS
You're invited to our upcoming HOPE Summer Leadership Weekend!
The Summer Leadership Weekend is an educational experience to learn from some incredible leaders and speakers. This event will help volunteers, board members, executive directors, hope group leaders, and individuals who want to better support their local communities with the tools and inspiration needed to make a continuous impact.
You're invited to our upcoming HOPE Summer Leadership Weekend!
The Summer Leadership Weekend is an educational experience to learn from some incredible leaders and speakers. This event will help volunteers, board members, executive directors, hope group leaders, and individuals who want to better support their local communities with the tools and inspiration needed to make a continuous impact.
event SPeakers
Aly SterlingNonprofit expertAly is a national authority on fundraising, strategic planning and board development for nonprofits. She will share practical tips for increasing your organization’s impact by empowering your volunteers and leaders and raising more money. You can learn more about her work at Aly Sterling Philanthropy.
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Dr. Tracey GaslinNurse Practitioner
Dr. Tracey Gaslin is a nurse practitioner at The UofL Physicians Hemophilia Treatment Center and a well-established educator. She earned her certification as a family nurse practitioner after receiving certification as a pediatric nurse practitioner. As a nurse practitioner, Dr Gaslin’s specialties have include care for patients with bleeding disorders and other hematologic conditions. In addition, Dr. Gaslin serves as the Executive Director of the Association of Camp Nursing, a nonprofit organization that provides education to camp healthcare providers.
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Dr. Tammuella SingletonDirector, Hemophilia Treatment Center Mississippi Center for Advanced Medicine
Dr. Tami Singleton is the Director of the Hemophilia Treatment Center at the Mississippi Center for Advanced Medicine. She received her MD from Louisiana State University and then completed her pediatric residency at the University of Miami. Following her residency, she completed her pediatric hematology/oncology fellowship training at Johns Hopkins University, where she developed a serious interest in disorders of coagulation, particularly hemophilia. After her fellowship training, she was recruited to join the pediatric hematology/oncology faculty at LSU and Children’s Hospital of New Orleans, ultimately ending up at Tulane University to pursue her desire to spend more time in the specialized coagulation medicine program.
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Cassandra StarksCassandra is a young women living with Hemophilia B. As a pole vaulter in college, Cassandra had to overcome injuries due to bleeds, but didn’t let her bleeding disorder get in the way of her athletic goals. Over the course of her college career, she improved her personal best to set both the indoor and outdoor school record and earned two NAIA All-American plaques. She graduated college with her Bachelor's degree in Biology and a Chemistry minor. Cassandra provides TaijiFit instruction, is an enthusiast about the mind-body connection and a firm believer of the power of a healthy mind. Cassandra lives in Colorado with her partner Paul and their 1-year old son, Clyde.
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Cathy BaggettCathy earned her Bachelor of Social Work from Murray State University in Murray Ky. Cathy started her
career in hemophilia at the Tennessee Hemophilia and Bleeding Disorders Foundation as the Program Services Coordinator and has been in the hemophilia field for over 15 years. She is currently working at Paragon Health Care Inc. as their hemophilia case manager. She enjoys working with individuals and families affected by bleeding disorders and walking beside them to educate and empower. |
michael borjasMichal Borjas is the Executive Director and has helped develop training curriculum and implement new training Programs. Today he trains in over 30 different Courses and has trained well over 13,000 Students in this time.
One of his proudest accomplishments Mr. Borjas sat as a Management Trustees with a Grant with the International Teamsters and The Federal Mediation and Conciliation Services. |
Cathy Tiggs
Cathy M. Tiggs is a pediatric and adult clinical social worker at the University Hospitals ofCleveland Hemostasis Thrombosis Center (HTC). She received her Master’s in Social Science Administration from Case Western Reserve University and is licensed to practice in the state of Ohio. Cathy joined the HTC in 2006 and has worked with the multidisciplinary team there to provide support and services to their families. Cathy is very active in the bleeding disorders community and travels across the United States creating and participating in family and provider workshops. She has served on several National Hemophilia Foundation (NHF) committees, and served 2 years as co-chair for the NHF annual bleeding disorders meeting. For the past 30 years, Cathy has spent her spare time leading a team of trainers at Tiggs Training & Consulting Group. As an educator, she works with public, private and non-profit
agencies in the area of strategic planning, staff training and leadership development. Cathy’s best times are spent with her 2 children, 3 grandchildren and “Duke” the German Shepherd. |
ana santosAna Santos se desempeña como medico especialista en
nutrición y Diabetes desde el ano 2012. Su objetivo principal se basa en educar y concientizar a la población acerca de la importancia de una buena alimentación junto con hábitos de vida saludables. La Dra Santos ha escrito varios artículos sobre salud y nutrición, entre los que se destacan “Tu Salud, mas que una infusión “ publicado en el 2018 por la revista Bleeding Times. Ana tiene dos hijos con Hemophilia y es voluntaria y miembro activo del comité latino del NYCHC desde el ano 2016. A raíz de la necesidad que se ha visto tiene la comunidad con desordenes de la coagulación de reconocer la alimentación como parte vital del mantenimiento de salud, la Dra ha preparado una presentación con el titulo “Nutrición en trastornos Hemorrágicos” que explica de manera especifica cuales son los nutrientes y la forma de alimentarse mas adecuada para estas personas; a la misma vez da a conocer cuales ingredientes en los alimentos tienen la capacidad de aumentar las probabilidades de sangrado y DRA ANA SANTOS DE JIMENEZ que hacer para convertir los alimentos en aliados para sentirnos mas saludables y sanos. |
Suzi GreerSuzi has been a RN for 35 years obtaining her undergraduate degree from Methodist Medical Center and Illinois State
University. Previous experience includes working in Obstetrics/Pediatrics, Internal Medicine, Bleeding Conditions and Thrombophilia. Suzi’s had the pleasure and honor of being in the bleeding conditions community and care for 21 years. 5 years as the Nurse Coordinator, at the Comprehensive Bleeding Disorders Center in Peoria, IL educating, advocating, and collaborating with people and families effected by bleeding conditions. The past 16 years she has worked with Takeda as a Senior Clinical Specialist providing and supporting bleeding condition education and advocacy. Suzi belongs to the National Hemophilia Foundation, Hemophilia Federation of America, World Federation of Hemophilia and International Society of Thrombosis and Hemostasis. |
FRIDAY, JULY 17TH
9AM | Facebook: General Session
10AM |Zoom: "How To Lead Your Organization Through This "New Normal"
11AM-1PM | Zoom: Qualified Training
12PM | Facebook: General Session
1PM |Zoom: NUWIQ: A human cell line derived recombinant FVIII sponsored by Octapharma
2PM | Zoom: "Putting on a Virtual Event in a Post COVID19 World"
2PM | Zoom: Nutrición en trastornos Hemorrágicos sponsored by Kedrion
3PM | Zoom: "Navigating Insurance" sponsored by Novo Nordisk
4PM | Zoom: "Reconnecting the Mind-Body through Fitness" sponsored by Medexus
5PM |Zoom: "Gene Therapy Research" sponsored by BioMarin
6PM |Zoom: "My Circle Of Control" Sponsored by Paragon
7PM | Facebook: General Session
10AM |Zoom: "How To Lead Your Organization Through This "New Normal"
11AM-1PM | Zoom: Qualified Training
12PM | Facebook: General Session
1PM |Zoom: NUWIQ: A human cell line derived recombinant FVIII sponsored by Octapharma
2PM | Zoom: "Putting on a Virtual Event in a Post COVID19 World"
2PM | Zoom: Nutrición en trastornos Hemorrágicos sponsored by Kedrion
3PM | Zoom: "Navigating Insurance" sponsored by Novo Nordisk
4PM | Zoom: "Reconnecting the Mind-Body through Fitness" sponsored by Medexus
5PM |Zoom: "Gene Therapy Research" sponsored by BioMarin
6PM |Zoom: "My Circle Of Control" Sponsored by Paragon
7PM | Facebook: General Session
SATURDAY, JULY 18TH
9AM | Facebook: General Session
10AM |Zoom: Gene Therapy Session sponsored by BioMarin
11AM | Zoom: Hope Group Training
12:00PM |Facebook: General Session
1PM |Zoom: Wilate: The Power of Balance sponsored by Octapharma
2PM | Zoom: Nutrición en trastornos Hemorrágicos sponsored by Kedrion
3PM | Zoom: "Working During Covid" sponsored by Ethical Factor
4PM | Zoom: Diversity and Inclusion Discussion Panel
5PM | Zoom: Find the crew that supports you sponsored by CSL Behring
6PM |Zoom: Resilience: Growing Through Life's Changes sponsored by Takeda
7PM | Facebook: General Session
10AM |Zoom: Gene Therapy Session sponsored by BioMarin
11AM | Zoom: Hope Group Training
12:00PM |Facebook: General Session
1PM |Zoom: Wilate: The Power of Balance sponsored by Octapharma
2PM | Zoom: Nutrición en trastornos Hemorrágicos sponsored by Kedrion
3PM | Zoom: "Working During Covid" sponsored by Ethical Factor
4PM | Zoom: Diversity and Inclusion Discussion Panel
5PM | Zoom: Find the crew that supports you sponsored by CSL Behring
6PM |Zoom: Resilience: Growing Through Life's Changes sponsored by Takeda
7PM | Facebook: General Session
2020 Sponsors
Event Sponsor
Advocate Sponsors
Virtual Summer Leadership Weekend Terms of Engagement
Thank you for registering to join us for our “virtual” Summer Leadership Weekend on July 17-18th, 2020. This live event will be a fun way to come together while still honoring the need for social distancing. We are planning a full list of learning, prizes and more that we hope you will enjoy!
In order to participate and get the maximum benefits from the live event, we have made a list we call the Rules of Engagement for the event so you know how to get the most out of this fun experience.
LINK TO REGISTER: https://www.hopeforhemophilia.org/spring-leadership-weekend.html
Thank you for registering to join us for our “virtual” Summer Leadership Weekend on July 17-18th, 2020. This live event will be a fun way to come together while still honoring the need for social distancing. We are planning a full list of learning, prizes and more that we hope you will enjoy!
In order to participate and get the maximum benefits from the live event, we have made a list we call the Rules of Engagement for the event so you know how to get the most out of this fun experience.
LINK TO REGISTER: https://www.hopeforhemophilia.org/spring-leadership-weekend.html
- Each individual must be officially registered for this event in order to win any raffle item. All raffle items/giveaway items are final. HOPE will not be able to exchange or change anything about the item won.
- To win a sponsored raffle item you must attend,be registered and be the first one to answer the raffle question correctly in the ZOOM educational sessions. Breakout Session winners will be notified via email within 24 hours.
- In order to win a Facebook Live raffle item, you must be the first participant to correctly answer the HOPE question posted in the live feed. Make sure you’re paying attention! You never know when it will be posted!! Facebook General Session winners will be announced during the live session.
- You must be affected by a bleeding disorder in order to receive any raffle prizes.
- Industry personnel, whether affected by a bleeding disorder or not, may NOT receive raffle prizes.
- You may only win ONE raffle item per registrant. You may also be eligible to win a gift card during a social media live stream.
- Family members should register separately.
- Hope does not take responsibility for any raffle items lost or unredeemed, many of which will be sent by third parties. It will be the sole responsibility of the recipient to use gift cards prior to expiration. Hope is not liable for delivery to invalid or undeliverable addresses, whether physical or email.
- By registering for this event you acknowledge that you will be added to our mailing list and provided information about future events and updates. No email address will be given or sold to third parties without written consent. If you wish to be removed from our mailing list please email us at info@hope-charities.org.
- You will receive a registration packet in the mail with the address that you provided. HOPE is not responsible for inaccurate or incomplete addresses provided or packets lost in transit.
- If you win a prize, you will be responsible for providing the mailing address to whomever is donating your prize. You may be required to contact a third party donor to receive your prize. If you do not wish to provide your information you may forfeit your eligibility to accept the prize.
- We will be using ZOOM as our platform. You will have to have the most current edition of ZOOM (5.0) in order to participate. This may require you to download an app on your mobile device or onto your computer drive to attend, however, you will not be required to set up an account.
- Each session will be moderated by one of our HOPE Staff members and will have a speaker / presenter who will cover a specific topic of interest. Each session will give you valuable information and we invite your participation and questions. At the end of each session, you may be asked to fill out a quick survey.
- For raffles, we will ask questions in order for you to win prizes. Questions will pertain to the sessions you have participated in, so be sure to pay attention!
- During the registration process you will have the opportunity to provide your cell phone number and we will provide you with updates via text message throughout the conference. If you wish to Opt-Out you can reply with the word STOP to disable text updates.
- By virtue of the receipt of this Engagement Notice, you hereby acknowledge and consent to having your image and voice recorded during the live conferences. Your likeness is part of the video conference, which is being recorded.
- The participant, hereby grants to the company, its agents, its owners, its advertising agency, licensees and producers or publishers of its promotional materials, educational materials and their successors and assigns, the right to use, publish and copyright my picture, portrait, and likeness, in whole or part, including alterations, modifications, derivations and composites thereof, in advertising and promotion of the company, as well as the production of advertising, informational, marketing and educational programs, throughout the world forever.
- If for any reason you object or do not want your image or likeness to be a part of any recording, the zoom platform allows you to ‘mute’ the video portion, in addition to the audio. You have the right to keep your video and audio muted, so you will only be able to view any particular portion of or the entirety of the conference. If during any portion of the conference you are ‘unmuted’ you do so willingly and voluntarily and such participation is tacit consent and agreement with the terms of section seventeen (17) of this Term of Engagement.