A publication of the Acoustic Neuroma Association
IN THIS ISSUE
Medical Report 4
Patient Stories 6
Support Groups 8
ANA Volunteers 10
AN COMMUNITY
The ANA began as a way for acoustic neuroma patients to connect with, and learn from, each other. Though we do much more than that, we still hold connecting and informing patients as our chief mission.
Support Groups
Find a group that fits your demographics, location, or experience. These groups meet regularly as a way for patients to learn from each other.
Community Connections
These informal meeting opportunities, organized by ANA volunteers and held in local communities. offer casual networking time and support through shared experiences.
One-on-One Support
Peer mentors are acoustic neuroma patients and family members/caregivers who are willing to talk about their acoustic neuroma experience. These volunteers provide information, encouragement, and support to other acoustic neuroma patients via telephone, email, and video.
Discussion Forum
Connect with other patients through our online forum for peer-to-peer support at anausa.org/forum
NEW TO THE ANA
If you’re new to the ANA community or are looking to engage more deeply, there are more resources available at anausa.org/community
INTERESTED IN GETTING INVOLVED?
To learn more about volunteering, contact us at 770-205-8211 or volunteers@anausa.org
CONNECT
You can also connect with us and find more resources on social media. Tag us in your posts or send messages directly to our pages—there is a lot of support in this community!
ANAssociation
AcousticNeuromaAssociation
acousticneuromaassociation
Acoustic Neuroma Association anassociation
Are You a Healthcare Provider?
We can help connect you with the AN community
If you are a healthcare provider and are interested in finding out more about ways to partner with the ANA, we would be happy to discuss options with you and your team.
Collaborative relationships provide opportunities to connect with the AN community, and we strive to create programs that offer information and support to those affected by acoustic neuroma/ vestibular schwannoma.
Your participation with the ANA helps to ensure that no acoustic neuroma patient faces this diagnosis alone or uninformed, and we thank you for your work. We look forward to partnering with you in the future.
Please contact Holly Green at hollygreen@anausa.org to get started.
Eye Care After Acoustic Neuroma Surgery
Information to help you navigate AN-related eye problems.
Proper eye care is vitally important in helping you effectively manage your AN-related eye issues and prevent further damage. This publication provides you with options and strategies for better managing the eye issues that affect acoustic neuroma patients, including when to see a medical professional.
GET YOUR COPY TODAY
This publication is free to ANA members and can be viewed in the member section of the ANA website. To request a print version, please contact us. Non-members can order online at anausa.org/shop
This free educational event includes presentations for patients at all stages of the AN journey, as well as Q&A time and networking opportunities. Registration opens soon. For more information, visit anausa.org/patient-events EVENTS
Join the ANA for a Full-Day Patient Event
SATURDAY, SEPTEMBER 23, 2023
Hosted by UH Cleveland Medical Center Cleveland, OH
ANA COMMUNITY
CONNECT AND DISCUSS
We recently reached out to our social media community for eye care tips and their best strategies for dealing with eye issues. Here’s what they had to say.
I had facial paralysis, and my eyelid was not fully closing. I got the eyelid weight. The difference was remarkable. It’s essential to protect your cornea.
—Bonny
I had a spring implanted in my upper lid rather than a weight. The spring has helped so much!
—Joelle
I ended up having to have a heavier eyelid weight put in. That helped a lot. But the best help was the scleral lens.
—Shayla
If you can find wrap-around sunglasses, they’re great for protection—not only from sunlight, but from wind! Also, please get your corneas checked regularly (at least yearly) to make sure that you’re keeping your eyes well lubricated.
—Valerie
I use the ointment in my eye at night and tape my lid shut. My eye has improved so much!
—Diana
I use lubricating drops during the day and an ointment with a moisture chamber at night. I also do warm compresses, which soothes any irritation. I use sunglasses for sun and wind protection.
—Melinda
BOARD OF DIRECTORS
President Meredith Mueller Daly, C.P.C.
Vice President Ronson Mahla
Treasurer Tracy Denmark Schwimmer
Secretary Samira Rajabi, Ph.D.
Past President
Neil D. Donnenfeld, MBA
Founder & President Emeritus
Virginia Fickel Ehr
Members at Large
Kimberly Ary
Robin Batra
Randall Berger
Robert Chernoff
Cody Cooper
Kathy Hill
David Kellogg
Hela Kelsch, D.O.
Greg Kingsley
Jay Magrisso
Mary Ann Mugel
Nancy Rhein
STAFF
Jim Shea Chief Executive Officer
Matthew Balte Manager, Membership and Development
Holly Green Manager, Healthcare Community Partnerships
My doctor consulted with and brought in an ophthalmologist. I suggest everyone see one. They will keep checking for the dry spots and give advice or meds to help. Saved my sight!
—Kelly
Titanium eye weight changed my life. I rarely need drops now and less eye issues overall.
—Sonia
Melanie Hutchins Manager, Volunteer Programs and Publications
Christina McCurdy Accounting Coordinator
Stephanie Rommer Manager, Digital Communications and Events
Donna Sweigart Outreach and Support Coordinator
MEDICAL ADVISORY BOARD
Co-Chair
Calhoun D. Cunningham, III, M.D. Duke Health
Co-Chair
David S. Haynes, M.D., M.M.H.C., F.A.C.S. Vanderbilt University Medical Center
Siviero Agazzi, M.D., MBA, F.A.C.S. University of South Florida Health
Chrisfouad R. Alabiad, M.D. Bascom Palmer Eye Institute
Matthew L. Carlson, M.D. Mayo Clinic
Steven D. Chang, M.D. Stanford Neuroscience Health
Christopher J. Farrell, M.D. Thomas Jefferson University Hospital
Melvin Field, M.D. AdventHealth
Steven L. Giannotta, M.D. Keck Medicine of USC
P. Daniel Knott, M.D., F.A.C.S. UC San Francisco
J. Walter Kutz, Jr., M.D. UT Southwestern Medical Center
Jeffrey D. Markey, M.D. ENT Associates of Greater Kansas City
Jennifer Moliterno, M.D., FAANS Yale University
Joseph J. Montano, Ed.D. Weill Cornell Medicine
Ravi N. Samy, M.D., F.A.C.S. UC Gardner Neuroscience Institute
Marc S. Schwartz, M.D. UC San Diego Health
Megan Sherod, Ph.D. University of Central Florida
William H. Slattery, III, M.D. House Clinic
Konstantina Stankovic, M.D., Ph.D., F.A.C.S. Stanford University School of Medicine
R. Mark Wiet, M.D., F.A.C.S. Rush University Medical Center
Daniel M. Zeitler, M.D., F.A.C.S. Virginia Mason Medical Center
Combatting Dry Eye
Treatment and management of dry eye manifestations for patients with acoustic neuromas
By Christina Abuata, O.D.
Acoustic neuromas, also known as vestibular schwannomas, are benign neoplasms of Schwann cells that develop on the eighth cranial nerve, or vestibulocochlear nerve, in approximately four out of 100,000 people.1 These Schwann cells are responsible for forming an insulated layer over all nerves to maintain proper development and function. If overproduced, Schwann cells can affect the function of the eighth cranial nerve, leading to symptoms of hearing loss and poor balance.1
A vestibular schwannoma, if large enough, can press against adjacent cranial nerves, including those that innervate the eyes. When these nerves are compromised, they can affect functions of the eye, such as eyelid closure, corneal sensitivity, and ocular muscle movement.2 Patients who are diagnosed with an AN or are planning for tumor resection, should be referred to an optometrist or ophthalmologist for ocular evaluation to prevent ocular complications from developing or worsening. Due to its proximity to the eighth nerve, the seventh nerve—or facial nerve—is primarily affected. In fact, approximately 14% of AN patients develop facial nerve damage after schwannoma resection.2 Impairment to this nerve will then disrupt function of the facial muscles, including the orbicularis oculi, which innervates the upper and lower eyelids. It is responsible for closing, blinking, and winking the eyes. A dysfunctional muscle will not be able to close the eyelid completely, causing a condition known as lagophthalmos. In Figure 1, the patient is unable to blink all the way, leading to a very dry and exposed eye, causing pain, redness, tearing, and blurred vision. Proper eyelid function is necessary to maintain a lubricated eye and preserve corneal health and vision. An additional cranial nerve affected by a schwannoma compression or resection is the fifth, or trigeminal nerve.
This nerve is responsible for facial and corneal sensation. When impaired, the cornea becomes anesthetized, known as neurotrophic keratitis (NK). Patients with NK can have serious ocular complications because they cannot feel or sense any symptoms of dryness, pain, burning, irritation, or foreign body. If not managed properly, these patients can develop ocular complications, such as punctate epithelial erosions, that may progress to an ulcer, infection, or even perforation. This can lead to permanent vision loss.
Lastly, the sixth nerve, or abducens nerve, is susceptible to dysfunction if the tumor is directly compressing it. The abducens nerve is responsible for innervating the lateral rectus, an extraocular muscle responsible for turning the eye outward. A compressed nerve will not stimulate the muscle and inhibits the eye’s movement, effectively leading to double vision.
It is imperative to counsel patients about potential ocular risks and complications from AN and AN tumor resection. An urgent referral for an ophthalmic assessment is warranted in any case of AN. An eye care professional will be able to evaluate eyelid positioning, blink rate, corneal sensation, ocular surface health, tear film quality, eye muscle movement, and alignment. The best treatment plan will be determined depending on the underlying ocular condition.
According to the Tear Film Ocular Surface Society’s Dry Eye Workshop II study, there should be a step-by-step method to treat any type of dry eye disease.4
The first step is to modify the environment and diet, and eliminate medications that may potentially worsen dryness. Avoid dry, windy, smoky, and low-humidity environments. While asleep, consider using a standing fan instead of the ceiling fan to avoid drying the ocular surface. If lagophthalmos is present, closing the eyes with an eye mask or eyelid tape will prevent the eyes from drying out during sleep. For daytime comfort, moisture chamber glasses are beneficial as they contain either a silicone or foam insert on the inside of the frame that traps moisture. These glasses also prevent air, wind, dust, or any type of environmental factors from irritating the ocular surface.
Diet plays an essential role as it can improve ocular surface inflammation and tear film quality. Increasing omega-3 fatty acids is proven to improve dry eye signs and symptoms.4 Omega-3 fatty acids contain eicosatetraenoic acid (EPA) and docosahexaenoic acid (DHA) which have anti-inflammatory properties.4 If taken through diet, consider eating salmon, tuna, walnuts, edamame, kale, spinach, or whole grains.5
On the contrary, there are certain medications known to worsen dry eye symptoms, including antihistamines, diuretics, SSRIs, oral contraceptives, estrogen, oral isotretinoin, and more.4 If you are taking any of these medications, please consult with your primary care provider and prescribing doctors to try to adjust your medications.
Ocular lubricants, including artificial tears, gels, and ointments are first line therapies for treating any form of dry eye. Preservative-free tears are preferred, as these do not contain preservatives that can be toxic to the cornea. Another method to improve dry eye symptoms is the use of collagen or silicone plugs. These are inserted into the tear duct to prevent the tears from draining out of the eye, and allow the tears to stay on the ocular surface longer. If symptoms persist, prescription eye drops such as topical steroids or immunomodulators may be warranted.
Patients with facial nerve paralysis develop lagophthalmos, which leads to corneal exposure and dryness. It is imperative that the eyelid spreads tears across the ocular surface naturally while blinking. These patients will need to consider more invasive treatments such as gold weight implantation or springs.5 These are surgically implanted into the upper eyelid to promote a natural blink and regain eyelid function. Another surgical option for lagophthalmos is a tarsorrhaphy, where the surgeon sews the upper and lower eyelids together to cover the ocular surface and provide protection. Tarsorrhaphies can be temporary or permanent depending on the patient’s condition.
Patients requiring a long-term solution that do not benefit from the above therapies can consider a non-invasive option of a rigid scleral contact lens (SL).6 SLs are hard, gas permeable domes of plastic that are fit by an optometrist to provide moisture and comfort to an exposed or dry eye. The SL is filled with a sterile, preservativefree saline and placed on the eye with a small suction cup. (Figure 2). This requires an extensive fitting process where an optometrist designs a custom lens for
each individual patient to ensure the lens provides good comfort and vision, and does not compromise corneal or scleral health.
The SL rests on the white part of the eye, the sclera, and vaults over the cornea, thus forming a fluid reservoir between the lens and the eye. (Figure 3). The fluid reservoir is composed of the preservative-free saline, and is in direct contact with the cornea, providing a constant flow of hydration. The SL protects the cornea from environmental factors and promotes lubrication, healing, and comfort. It helps alleviate symptoms of burning, stinging, discomfort, redness, and more. SLs can even improve visual function for patients who have corneal epithelial erosions or scarring. The lens acts as a barrier to the environment, shielding the cornea from drying out, but also from any potential trauma. Dry eye and lagophthalmos are just two ocular conditions that may warrant scleral lenses. Other conditions include NK, irregular corneas from pathologies, trauma, infections, postsurgical complications, and more.6
In summary, there are several readily available treatment options for patients with dry eye manifestations from AN. The goal is to protect and preserve the
ocular surface while providing comfort to these patients. Therapies begin conservatively with ocular lubricants, gels, and supplements. However, for more advanced conditions, patients may need a more permanent solution with the use of a SL. Any patient who is diagnosed with AN should be referred to an ophthalmologist or optometrist for close monitoring and management.
Christina Abuata, O.D. is an optometrist at the Alkek Eye Center at the Baylor College of Medicine in Houston. She completed a cornea and contact lens fellowship at the University of Houston and a BostonSight PROSE clinical fellowship. She currently manages and treats patients with unique ocular surface conditions with specialty contact lenses, such as scleral lenses and PROSE (Prosthetic Replacement of the Ocular Surface Ecosystem).
References: References available upon request, or you can view a PDF that includes references by logging into the Member Portal on the ANA website. Click the March 2023 newsletter to access.
Figure 1
Figure 3
Figure 2
MY EYE CARE JOURNEY
Eye Care Tips for a Better Quality of Life
By Bonny Lally, Peer Mentor and Leader, Aftercare/Post-Treatment Support Group
At age 60, I had retrosigmoid surgery. The surgeon assured me that the tumor was 100% removed, and that my facial nerve was intact. I was aware of the possibility of facial paralysis, hearing loss, and other risks involved with surgery. Fortunately, however, my medical team was highly experienced, well informed, and communicative with each other and me.
I was back at home three days after surgery when I noticed that my left eye was uncomfortable. Per my doctor’s advice, I used drops, ointment, and plastic wrap–quite an ordeal.
One week post-surgery, my neurosurgeon suggested a consult with a plastic surgeon for an eyelid weight. My eyelid on my AN side was not fully closing, causing the discomfort. I had no idea what an eyelid weight was!
About a week later, I returned to the hospital for a 30-minute outpatient procedure with local anesthesia to surgically implant the weight. The surgeon inserted the tiny disk onto the outside of my upper eyelid. A couple of stitches later, I went home and applied ice for pain. I was amazed at the quick relief the eyelid weight was to my eye!
I am also a contact lens wearer, but I had to wear glasses during this time. In about three to four months, my facial paralysis improved, and my eyelid started to close better on its own.
About a year later, the weight was removed in a similar procedure, and I was able to wear my contact lenses again. Soon though, I realized my vision was blurry. My plastic surgeon recommended that I see an ophthalmologist about a scleral lens, so I went to see the specialist at Wilmer Eye Institute.
The ophthalmologist observed that my eyelid was not closing fully all the time, and that my cornea was becoming scarred, an unhealthy condition. A scleral lens would protect the cornea. It is an oversized rigid lens that has a little bump in the center to
I am grateful for the aftercare given to my eyes following AN surgery, and I urge you to ask your doctor to refer you to specialists that may be able to help you achieve a better quality of life.
hold sterile saline on the cornea. The edges of the lens rest on the white (or sclera) of the eye.
Scleral lenses are similar to contacts, and are custom made to your prescription for your affected eye. Since they’re custom made, there is a fitting process. This involves the doctor inserting the lens for about two hours, then reexamining the eye. This happened over three consecutive days and finally, the fitting was complete. It was not an uncomfortable process.
I have been wearing the lens daily for the last 3+ years. Care of the lens is similar to my soft contact lens, and was demonstrated for me. I also practiced inserting and removing the lens, which was a little tricky at first. I attend yearly follow-ups for the
scleral lens, and see my regular optometrist for my soft lens. The scleral lens is considered a prosthetic device and was covered by my private insurance.
About three years later, I ordered a replacement lens, due to wear and tear, at a cost of $12.50–quite a bargain! After I received the new lens from the manufacturer, I sent my gently used one back; it was polished and returned to me.
I am grateful for the aftercare given to my eyes following AN surgery, and I urge you to ask your doctor to refer you to specialists that may be able to help you achieve a better quality of life.
MY EYE CARE JOURNEY
Navigating a Difficult Eye Care Journey
By Ken Sacharin
One of the outcomes of my successful retrosigmoid surgery to remove an acoustic neuroma was the muscles around my right eye becoming paralyzed. The probability of this sort of eye disability from acoustic neuroma surgery is low, but it does happen occasionally.
My upper eyelid would no longer fully close when blinking or sleeping. My lower eyelid drooped, constantly dripping tears, and the dripping was exacerbated by the inability of the upper lid to completely close and windshield wipe away the natural flow of tears.
My eye issues manifested soon after surgery, so I was quickly scheduled for oculoplastic surgery to place a small platinum weight inside the upper eyelid— to give blinking a gravity assist, tighten the edges of my eyelids, and bulk up my lower eyelid with tissue from elsewhere in my body, lessening the lower lid’s droop.
In the years since, I’ve had repeated surgeries on the eye—one, because my initial platinum weight worked its way through the skin and had to be removed, and another to reimplant a heavier platinum weight to give me even more assistance when blinking. I have been plagued by eye dryness, as well as a ten-fold increase in invasive particulate matter (and stray eyelashes) unavoidably invading my eyeball.
I’ve also had lash ptosis on the upper lid to adjust the lid so that my upper eyelashes wouldn’t continue growing down— sometimes scratching the eye. The lash ptosis didn’t help much, and I continue to have eyelashes that scrape my right eye.
I keep my eye lubricated throughout the day to prevent scratches from particles and lashes. I’m also in the process of getting fitted for a scleral contact lens to better protect my cornea.
You can try eye patches during the day if you fancy the pirate look. This keeps the eye somewhat protected, but you still need to use drops.
I’ve been fortunate to have the best medical care in all of this. The following eye care specialists have been helpful for me: an oculoplastic surgeon, a facial nerve surgeon, an ophthalmologist (one that specializes in the scleral/PROSE lens), and an optometrist. There are also links to helpful resources for eye care products on the ANA website.
I wish you all the best in your eye care journeys.
HELPFUL TIPS
• If you have eye dryness for any reason, it is crucial to protect your cornea from drying out. During the day, I use eye drops about every 30 minutes. The brand I prefer is Refresh Liquigel.
• If you need overnight protection, eye lubricant such as Lacrilube helps a great deal. This is a vaseline-like ointment. Hold your lower lid open a bit and squeeze a small line of ointment under your lower lid. The next morning you will need to use a lot of saline solution to rinse your eye to remove nighttime accumulation. You can also use saline solution to rinse your eye at night.
• Cover your affected eye at night. There are several methods you can use. For example, Glad Press-N-Seal works well to plaster your eyelids shut. Cut a small piece and press it into your face over your closed eye. Note: This is an effective low-cost solution but, in my case, it had a downside. By pressing the eyelids flat, I inadvertently trained my upper eyelashes to grow down into my eye. So instead, at night, I use either an adhesive, plastic moisture-retaining bubble over my eye (needs soap, hot water and gentle scrubbing to remove the bubble in the morning) or silicon moisture-retaining goggles. These are comfortable at night, easy to put on and take off, though they can be expensive. You can also try eye patches during the day if you fancy the pirate look. This keeps the eye somewhat protected, but you still need to use drops.
SUPPORT GROUPS
SUPPORT GROUPS AND CONTACT INFORMATION
Thank you to all of our support group leaders and co-leaders, all of whom are acoustic neuroma patients or care partners. We are grateful for the incredible amount of support and encouragement they provide to others by scheduling and facilitating opportunities to meet, network, and learn about acoustic neuroma topics of interest.
ALABAMA, MOBILE
Alan Heffernan 251-621-5665 alanheff@gmail.com
ARIZONA, PHOENIX
Tracy Denmark Schwimmer 602-561-1855 marcschwim@aol.com
ARIZONA, TUCSON
Carol Franklin
520-490-5035 lefsequeen53@gmail.com
Tricia Jennings 520-825-9845 azchipster@gmail.com
CALIFORNIA, LOS ANGELES
Kimberly Ary kimberly.ary3@gmail.com
Leah Keith leahkeith@me.com
CALIFORNIA, PALO ALTO
Christina Esfehani
650-575-6990 esfehani@yahoo.com
Mark McLaren 925-838-8175 calpedaler @earthlink.net
CALIFORNIA, SACRAMENTO
Hazel Berman
916-983-9313 hazelannb @sbcglobal.net
CALIFORNIA, SAN DIEGO
Margaret Briggs
619-500-6141 glmrchk@gmail.com
Melissa Diaz missdiaz@me.com
Helen McHargue 760-728-0309 foodsmarts@gmail.com
CALIFORNIA, SAN FRANCISCO/OAKLAND
Carol Most Walker 415-889-3547 carol@wedrinktea.com
Tom Sattler 415-864-0764 tsattler@gmail.com
COLORADO, DENVER
Ginnie Ferraro 303-469-6391 ginnietennis @hotmail.com
DC, WASHINGTON
Michelle Nemeth 703-772-7114
michelle.f.nemeth @gmail.com
Allison Shaffer 301-279-9166 akgshaffer@gmail.com
FLORIDA, JACKSONVILLE
Dyanne Hughes 904-624-0940 dyhughes55 @comcast.net
GEORGIA, ATLANTA Meredith Daly 678-525-1941 meredith @meredithdaly.com
ILLINOIS, CHICAGO Leah Jenks 708-954-7774 leahgjenks@gmail.com
KENTUCKY, LOUISVILLE Kathy Gardner 502-593-9224 kathyc0407@aol.com
LOUISIANA, NEW ORLEANS Joan Lemmon 504-261-6490 joanmlemmon @gmail.com
MICHIGAN, STATE OF Rick May 734-812-8054 rmay726@gmail.com
MINNESOTA, MINNEAPOLIS/ST. PAUL Steve Blons 612-925-5926 bodysoul@earthlink.net
Laura Ferenci
612-501-2248 lkferenci@gmail.com
MISSOURI, COLUMBIA Carol Gardner 573-690-3296 carolhgardner @gmail.com
MISSOURI, ST. LOUIS
Agnes Garino 314-821-1905 algarino@sbcglobal.net
Phyllis Trulock 314-822-3221 ptru20@yahoo.com
NEW HAMPSHIRE, LEBANON (CoSponsored Group with Dartmouth-Hitchcock Medical Center)
Shannon Bagley shannon.m.bagley @hitchcock.org
NEW JERSEY –CHERRY HILL
Iryna Mosendz 609-705-6623 lutrinas@gmail.com
NEW YORK, ALBANY/ MID-HUDSON
Tracey Collins 581-382-3283 Tracey.Collins6273 @gmail.com
NEW YORK, NEW YORK CITY
Miranda Warren Sacharin 925-297-9435 m.sacharin@gmail.com
NEW YORK, ROCHESTER/SYRACUSE
Tom Banach
585-732-4377 tom_banach @hotmail.com
NORTH CAROLINA, STATE OF Stewart Binder 919-624-3256 marylandterp.888 @gmail.com
Lisa Fisher 412-996-2386 lfisher@rubollc.com
OHIO, CINCINNATI (DOWNTOWN)
Emily Praeter 513-265-1350 elpraeter@gmail.com
OHIO, CINCINNATI (WEST CHESTER)
Alice Wedding 513-831-0336 aj2mydad@yahoo.com
OHIO, COLUMBUS
Natalie Epps 614-735-0739 natalie.p.epps @gmail.com
OHIO, NORTHEAST/ CLEVELAND
Pat Gillespie 330-605-7224, cpgillespie@hotmail.com
OREGON, PORTLAND
David Noyes 503-419-7418 dcnoyes@comcast.net
PENNSYLVANIA, PHILADELPHIA
Marya Camilleri 215-313-0727 maryavancam @yahoo.com
PENNSYLVANIA, READING
Nancy Graffius 610-939-9114 ngraffius@comcast.net
RHODE ISLAND, EAST GREENWICH (SE NEW ENGLAND) Tony DiBella 401-523-9467 ajd@orgtransitions.com
SOUTH CAROLINA, COLUMBIA
Ricky and Robyn Roberson 803-729-4040 rroberson @millsautogroup.com
TENNESSEE, NASHVILLE
Lauren Vaden 615-232-4929 tarheelbluesy@gmail.com
TEXAS, DALLAS/ FORT WORTH
Linda Dorasami 817-244-0615 anausa.dfw@gmail.com
Laura Spence 972-974-1516 lauraspencetx @gmail.com
TEXAS, HOUSTON
Mariana Irato 832-474-4090 mariana_irato @yahoo.com
Shawn and Connie Wilkins 832-458-0236 connie.jo.wilkins @gmail.com
VIRGINIA, ROANOKE
Johnny Diaz 904-738-5063 johnny.diaz@yahoo.com
WISCONSIN, GREEN BAY
Bonnie Simon 920-731-4647 bjs3323@gmail.com
WISCONSIN, MILWAUKEE
Judy Jones 414-491-6249 jjonescurran539 @gmail.com
If there is not a support group in your area, contact volunteers@anausa.org for information about opportunites near you.
SPECIALTY CARE
SUPPORT GROUPS
online only
AFTERCARE/ POST-TREATMENT
SUPPORT GROUP
Bonny Lally
410-660-1259 bdaymusic@gmail.com
CAREGIVER
SUPPORT GROUP
Sara Wasserman
928-301-8781 artspeaks10 @hotmail.com
FACIAL PARALYSIS
SUPPORT GROUP
Tara Paul 303-868-7181 tnpaul@comcast.net
HEADACHES (PRE-TREATMENT)
SUPPORT GROUP
Ken Posner
248-464-0808 kennyposner @gmail.com
HEADACHES (POST-TREATMENT)
SUPPORT GROUP
Agnes Garino 314-821-1905 algarino@sbcglobal.net
MUSICIANS WITH AN SUPPORT GROUP
Stefanie Batson-Martin 407-493-7095 floridaswimmer14 @aol.com
NEWLY DIAGNOSED/ PRE-TREATMENT
SUPPORT GROUP
Chad Nye
407-496-8357 chadnye@gmail.com
REGROWTH
SUPPORT GROUP
Miranda Warren Sacharin 925-297-9435 m.sacharin@gmail.com
YOUNG ADULT
SUPPORT GROUP
Michelle Nemeth
703-772-7114
michelle.f.nemeth @gmail.com
Emily Truell
920-229-5201 emily@lacamp ground.com
HIGHLIGHTS FROM 2022 SUPPORT GROUP MEETINGS
The ANA continues to expand its network of support groups, providing a variety of options for your convenience, including geographic groups, virtual specialty groups, and co-sponsored groups with our medical partners. Providing encouragement is an important component of ANA support groups, but meetings provide so much more! Take advantage of guest speakers, panel discussions, informational presentations, and networking time. Meetings are free, open to all interested persons, and highlight a broad range of topics, including those below presented in 2022:
BALANCE ISSUES, DIZZINESS, AND VESTIBULAR THERAPY
• Dizziness in AN patients
• Hearing and Balance Following Radiosurgery
• Yoga for Balance
COGNITIVE/EMOTIONAL
• Living Well with Persistent Uncertainty
• Medical Trauma and Coping with Anxiety
FACIAL ISSUES AND REHABILITATION OPTIONS
• Facial Neuromuscular Rehabilitation
• Innovations in the Assessment, Education, and Management of Patients with Facial Paralysis
• Surgical Rehab Options for Facial Paralysis
• The Importance of the Facial Nerve in the Symptoms and the Treatment of AN
GENERAL/ MISCELLANEOUS TOPICS
• AN Case Presentations and Panel Discussion
• Taste Changes Associated with AN
HEARING ISSUES, DEVICES, AND TINNITUS
• Hearing Assistive Technology
• Hypnosis Therapy for Tinnitus Reduction
• Tinnitus Management
• Hearing Technology Options
RESEARCH/ ON THE HORIZON
• From Surgical to Pharmaceutical: Emerging Treatment Options
• AN Treatment Options: Development of a New Decision Aid
TREATMENT OPTIONS
• AN Management Based on Patient Outcomes and Quality of Life
• Conservative Management Options after Diagnosis
• Considerations in AN Management
• Modern Management of AN
• Observation for ANs –When Is It Appropriate?
• Overview of Treatment Options and Strategies for Facial Nerve and Hearing Preservation
• Radiosurgery Options
• Surgical Options
• The AN Toolbox: An Individualized Approach to Treatment
• Treatment Options: What Are Reasonable Outcome Expectations?
• What to Expect After AN Surgery
HERE’S WHAT YOU’RE SAYING ABOUT OUR SUPPORT GROUPS AND MEETINGS…
In the few meetings I have attended, I’ve really appreciated your kindness and understanding, along with leadership.
—Chuck
You really helped me connect with my fellow AN Warriors when I felt alone in my journey.
—Natalie
Thank you to the ANA, the volunteers who facilitate/ moderate the support groups, and all of those who participate and share their experiences.
—Phyllis
Thank you...the fact that I knew you were there for me and others with AN really made the path much smoother and less scary. You supported me in a way family and friends cannot.
—Donna
Great group of people, and glad to know I am not alone.
—Janice
Thanks for bringing us these great programs!!
—Elaine
ANA VOLUNTEERS
VOLUNTEER PROFILE
In Conversation
ANA speaks with volunteer, Carol Franklin, support group leader, Tucson, AZ
Acoustic Neuroma Association:
What has surprised you most about volunteering?
Carol Franklin: As a long-time volunteer–soon to be 20 years!–I continue to be amazed at the bravery and sincerity of individuals who attend our support group meetings. Each individual’s story is unique, and they are willing to share their experiences when they are most vulnerable. The exchange of ideas and suggestions is so helpful to everyone. We support one another and grow together as individuals and as a group.
ANA: What do you wish other people knew about the ANA?
Franklin: I have seen the ANA change and grow in the most positive ways. The website has an incredible amount of information available. There are so many options to engage and learn. I particularly like the ability to participate in other support group meetings and events virtually–these opportunities have opened doors for everyone, and I hope others are taking advantage of these resources.
ANA: Tell us about some of the people you have met while you’ve been involved with the ANA. Franklin: I have a new group of best friends through the Tucson support group. There is no substitute for getting to know someone who has gone through the same major health experience as you.
ANA: What might someone be surprised to know about you?
Franklin: This is a funny question because, typically, I can cite the fact that I had brain surgery as my most unique aspect! My husband and I have dedicated 35 years to being foster parents for children and adults with disabilities. Those individuals enhanced our lives, and we continue to see some of them long after they have moved on.
Carol Franklin
ANA: What would you tell someone who is thinking about volunteering?
Franklin: Just jump in and get started! You will never regret it.
ANA: What do you do when you aren’t volunteering?
Franklin: I am enjoying retired life, which includes travel, bicycling, golf, and hiking. We plan trips that incorporate all of these activities, and it is a wonderful reward after years of hard work.
ANA: Can you share a tip that helped you during your AN journey?
Franklin: The biggest challenge for my recuperation from AN surgery was learning to be patient during the healing process. Having never had surgery before, I naively expected my body to return to “normal” in a few days, just as if I had a minor illness. Be patient and enjoy each day.
ANA: What inspires you to engage with and support the ANA?
Franklin: The support group attendees inspire me to continue to be involved. New attendees need the support of our experienced, core group members, and many of the attendees are my friends. I leave each meeting feeling renewed, and I’m glad that I continue to volunteer.
2022 ANA SUPPORT GROUPS BY THE NUMBERS SUPPORT GROUPS
9
39
19
1,200
103
61
Support group attendance Support group meetings Support group leaders/co-leaders
MOST POPULAR TOPICS
• Treatment Options
• Hearing Issues, Devices, Tinnitus
• Facial Issues and Rehabilitation Options
• Caring, Sharing, Networking, and Support
• Cognitive and Emotional
• Research and Emerging Treatment Options
ONLINE SUPPORT
1,936
(about 12 per day)
ANA Discussion Forum new users
16
Number of closed Facebook support groups moderated by ANA staff and volunteers
Eric’s Story
Finding Balance After Acoustic Neuroma
By Mike Clark
You’d think a retired military veteran who worked as a police officer for 26 years might slow down. But 60-year-old Eric Moyes doesn’t do “slow.”
“I enjoy mountain biking, golfing, physical fitness, and the outdoors,” says Moyes, a dad of three and grandfather who still works part time at the sheriff’s department in Joliet, Illinois.
A few years ago, Moyes felt severe head pain during his gym workouts. He didn’t know he had a growing acoustic neuroma, but he knew he should see a doctor. His troubles started almost two decades earlier, however, when shortly after his time in the military, Moyes felt a sharp headache while working out at the gym.
“I went to the emergency room,” he says. “They did their tests, and they said they couldn’t explain it.”
The pain disappeared—until almost 20 years later when it suddenly came back.
Moyes waited it out, thinking it would come and go like before. He laid off exercise for a few days, but as soon as he started again, the pain returned. His doctor took an MRI.
“He comes in and says, ‘You’ve got a tumor in your head.’ I probably turned as white as a ghost.”
The physician referred him to Mark Wiet, M.D., at RUSH who explained that the tumor was only a few millimeters in size.
“When the tumors start to grow,” explains Dr. Wiet, “you can continue to watch them while they’re small, go ahead and take them out with surgery, or you can treat them with radiation.”
Moyes and Wiet chose observation. But in 2017, Wiet showed Moyes an image of the growing tumor and suggested it was time to remove it.
Reach out to someone who went through it, to join communities, or contact organizations that will inspire you.
“I was like, ‘All right, let’s do this.’”
The surgery went smoothly. Within 48 hours, Moyes was walking, but he still had a difficult recovery ahead. His main concern was the risk of facial palsy.
“I remember speaking to the resident,” Moyes says. “I asked, ‘Is my face moving all right?’ And he said, ‘Yes. But things could get worse before they get better.’”
Moyes went home and continued to improve. He took walks through the neighborhood and worked on his balance. Then one day, as he was looking in the mirror, he noticed the left side of his mouth drooping. It seemed his greatest concern was coming true.
Wiet put Moyes on a 19-day prednisone regimen, which, in Moyes’ view, was the
hardest part of recovery. Because of the steroid medication, he only slept about three hours each day. Moyes also felt selfconscious about being in public. Luckily, a friend persuaded him to get outside, and it changed his perspective.
“You know what,” Moyes thought, “I can deal with it. Put the vanity aside.”
One morning while shaving, Moyes saw his lip moving. Slowly but surely, he was regaining control.
Moyes’ life mostly returned to normal. In fact, his recent tests have shown no tumor recurrence or hearing loss. He stays active but still has some trouble with balance, and getting back to biking for the first time presented challenges.
“I went over the handlebars and crashed more times in those two hours than I probably had in my whole life.”
Still, Moyes considers himself lucky that his acoustic neuroma treatment and recovery went so well.
“I’m one of the fortunate ones,” he says. Moyes’ advice to others is to reach out to someone who went through it, to join communities, or contact organizations that will inspire you. He was motivated by others who got treatment and recovered.
“I like watching American Ninja Warrior,” he says. “And there was a person competing that had the same procedure. He was able to run those courses. So don’t let fear overcome you.”
If you need treatment for an acoustic neuroma, schedule your appointment at RUSH by calling 888-352-7874.
Understanding Cochlear Implants
Cochlear implants as an option for AN-related hearing loss
Matthew L. Carlson, M.D., James R Dornhoffer, M.D., Michael J. Link, M.D., Mayo Clinic, Rochester, MN
Most people diagnosed with an acoustic neuroma initially present with hearing loss in the affected ear. This hearing loss is usually progressive; however, about 10% of people will experience sudden hearing loss. Regardless of what treatment a person chooses—observation, radiation, or surgery—there is a moderately high risk of developing non-useful hearing in the ear with the acoustic neuroma over time. This is true even if the tumor does not grow. Most commonly, people with advanced hearing loss in one ear, singlesided deafness, experience difficulty identifying the direction sound is coming from. They also have trouble hearing other people speak when there is a lot of background noise. A subset of people also experience bothersome ringing or buzzing in the ear (tinnitus).
People who have advanced hearing loss in one ear from an acoustic neuroma are often recommended CROS-aids, or bone-conduction devices. These devices send sound from the deaf ear to the healthy ear. While these devices help people detect sound coming from the “deaf” side, they don’t allow sound localization or help filter background noise when a person is trying to concentrate on a specific conversation—for example, in a crowded restaurant. At least 70% of people decide to not use these technologies to improve one-sided hearing loss.
Cochlear implants are surgically implanted devices that are used to restore poor hearing in the implanted ear. Cochlear implants were first approved by the FDA in 1985 for people with deafness in both ears, and since that time, almost one million people have received a cochlear implant worldwide. Traditionally, cochlear
Reports from many centers, including Mayo Clinic, show that cochlear implants can work very well in some people with ANs.
implants were not offered to people with acoustic neuromas because it was thought that the implant would not work since the tumor pushes on the cochlear nerve. Over time, reports from many centers, including Mayo Clinic, have shown that, in fact, cochlear implants can work very well in some people with acoustic neuromas. Because the FDA recently approved cochlear implants for people with single-sided deafness, there has been a growing interest within the acoustic neuroma patient community. In contrast to bone conduction devices or CROS-aids, cochlear implants seek to restore hearing in the deaf ear, thereby restoring some of the benefits of having two working ears—specifically, sound localization and better speech understanding in background noise.
Though they do not restore “normal” hearing, cochlear implants can improve hearing. They also improve tinnitus for many people.
For a cochlear implant to work properly, the cochlea must not be overly scarred, and the cochlear nerve must be intact and reasonably healthy. Thus, most people with small tumors who are undergoing observation, and people who have had radiation, are likely to benefit from a cochlear implant. The recent literature shows that about half of people
who have acoustic neuroma surgery with the cochlear nerve preserved may receive benefit from a cochlear implant.
We recently reviewed our own records at the Mayo Clinic, and we are happy to report that most patients who underwent cochlear implantation with an acoustic neuroma, or after the removal of an acoustic neuroma, achieved useful hearing in their affected ear. In fact, as a group, scores on common hearing tests were close to those we might expect from a cochlear implant user who has never had an acoustic neuroma.
As in other studies, we found that patients who underwent radiation or are undergoing observation generally had better outcomes compared to those who had surgery, with 100% of these patients achieving usable hearing in their ear with a tumor. However, patients who had surgery may still benefit from an implant, as, in our analysis, two-thirds of patients who had surgery for their tumor were able to get usable hearing with their cochlear implant.
For some, such as those with larger tumors, it is difficult to maintain a sufficiently healthy cochlear nerve for a cochlear implant to function. Also, some people adjust reasonably well to hearing loss in one ear and choose not to use a device to assist with hearing. Also, even though cochlear implants are approved by the FDA for single-sided deafness, many insurance carriers do not cover cochlear implantation in this condition. Hopefully, insurance coverage will improve to cover this benefit more consistently for people who are otherwise good candidates and interested in pursuing cochlear implantation.
SPONSOR SPOTLIGHT
One of the country’s preeminent academic medical centers, University Hospitals Cleveland Medical Center’s Skull Base Center is renowned for joining advanced technology with a compassionate approach to care–a combination that leads to exceptional outcomes and lasting bonds between caregivers and patients.
The UH Ear, Nose & Throat Institute, in partnership with the UH Neurologic Institute, is at the forefront of the most advanced medical and surgical treatments for acoustic neuromas and skull-based disorders.
Because acoustic neuromas involve not just the brain, but also the nerves used in hearing, facial expression, and balance, we employ a multidisciplinary approach to treatment, with a team composed of world-renowned neurotologists, neurosurgeons, radiation oncologists, facial plastic surgeons, audiologists, radiologists, facial and vestibular physical therapists, speech pathologists, and nurse practitioners.
We offer live and virtual consultations with our physicians. Our navigator will help facilitate your initial visit and all follow-ups needed. To schedule an appointment or learn more, visit: UHhospitals.org/ ENTVirtualConsult or call 216-844-3048.
The experienced physicians in the departments of otolaryngology–head and neck surgery and neurosurgery at Ohio State University Wexner Medical Center have been successfully evaluating and treating patients with acoustic tumors for decades. We proudly provide a multidisciplinary approach to our care, combining the efforts of our neurotology, neurosurgery, audiology, radiation oncology, and neurology teams to ensure our patients have the safest, most advanced, most optimal outcomes. We also provide comprehensive same-day evaluations with multiple team members and offer online evaluations when possible.
For more information or to schedule an appointment, please call 614-366-3931 or visit go.osu.edu/ acousticneuroma
The UC San Diego Acoustic Neuroma Program provides unsurpassed AN care to patients across the country and around the world.
We are experienced. Rick Friedman, M.D., Ph.D., and Marc Schwartz, M.D., have the largest combined AN experience in the US, with more than 4,500 surgeries. They are experts in all three surgical approaches and in the use of radiosurgery/therapy.
We are unique, offering holistic, comprehensive care that includes vestibular therapy, osteopathic treatment to promote healing and patient comfort, and advanced hearing implant options.
We are compassionate. Our team includes patient navigators who have been through AN surgery, who can share their experiences and help guide patients through diagnosis, treatment, and follow-up care.
We offer complimentary, no obligation record reviews and a phone consultation. All of us at the UC San Diego Acoustic Neuroma Program want you to feel truly cared for, from your first contact and for the rest of your life. Visit our website for more information: https://health.ucsd.edu/campaigns/Pages/acousticneuroma.aspx
At Vanderbilt Health, we make healthcare personal. Our Skull Base Center offers a multidisciplinary team of experts who focus on the treatment of acoustic neuroma. We are leaders in treating acoustic neuroma and other skull base tumors, using the latest therapies and technologies to tailor your personalized treatment plan.
A patient care coordinator is at the center of your Vanderbilt Health acoustic neuroma experience— scheduling appointments, collecting medical records, and answering questions. Your treatment team includes ENTs, radiologists, neurosurgeons, neurotologists, facial plastic surgeons, physical therapists, and audiologists. In addition, we have neuroanesthesia specialists and a unique 35-room neurosurgical ICU.
When diagnosed with an acoustic neuroma, you have many questions, and there are multiple treatment options to consider. Our patient care coordinator can help you get those answers, and set up an appointment with a top-ranked physician within one week. Self-referrals are accepted.
To learn more, call 615-637-3639 or visit VanderbiltHealth.com/program/acoustic-neuromas
ANA CONTRIBUTORS
OCTOBER-DECEMBER 2022
AN ARCHANGELS
($5,000+)
Christine Bakalar
Randall Berger
Gordon Brothers Group, LLC
Tom Kennedy
AN ANGELS
($2,500-$4,999)
Robert Chernoff
Becky Diggs
JoAnn Lashley
Jane Shuller
John Zipprich, II
GRAND BENEFACTORS
($1,000-$2,499)
Anonymous Donor
Jack Alweiss
Jeffrey D. Barr
Steven Chang, M.D.
Janet Chiavetta
Rhonda & James Cooper
Meredith Mueller Daly
Christopher Eisgruber
Christopher Farrell, M.D.
Deborah Gerughty
Todd W. Hoffman
Laura Homick
Vinit Jagdish
Sara Koppel
Margaret Lampazzi
Jamie Mieth
Joseph Musumeci
Susan O`Donnell
Julie Potter
Alexandra Riabova
Joyce Savage
Jim Shea
Dawn Stegelmann
Timothy Weaver
Jane Webb
ANA BENEFACTORS
($500-$999)
Anonymous Donor
O. Gordon Brewer
Joel Bryan
Michael Chicoine, M.D.
Neil D. Donnenfeld
Michael Gavigan
Janine & Mark Haun
Richard Hertel
Mary Hopkins
Barbara Hyatt
Mark Imhof
Nikhil Joshi
David Laufer
Robert Mann
Alan Micco, M.D.
Eric B. Parker
Michael Phillips
Susan Plassmeyer
Miranda Sacharin
Thomas Sattler, M.D.
Marc Schwartz, M.D.
John Sciortino
Thomas Velez
Carolyn Wells
ANA PATRONS
($250-$499)
Karen Baum
Daniel Bickel
Frederick Buckner
Edda & Michael Callahan
Cody Cooper
Laura Ferenci
Stanley Foster
Diane Garfield
Howard Goldman
Phyllis Helfand
Adam Hermsen
Linda & Roger Howard
Wendy Kahn
Robert Kaplan
Janice Kerr
John Keyes
Bonita Lally
Helena Lesher
Susan Lewis
Bobbie & Walter Lee Miller
Kari Mrazek
Francis Noordover
Chad Nye
Ronald Oleet
Curtis Palm
Analise Pietras
Mary Ann Richards
Jack Rodman
Maria Santiago
Kelly Scholl
Roger Tanski
Dr. Walter Weinstein
Charles Zug
Anonymous Donors
Denise Velez Armijos
Jeanette Baker
Sherry Ballance
Jeffrey Barr
Brett & Katie Bonner
Alfred Bove
Kathy Boyd
Judy Brinkman
Carolyn Britt
Broadridge Foundation
Deborah Carbaugh
Gary Cash
John Catalano
Dana Christensen
Brett Cohen
Kerrie Colleran
Diane Czech
Clarice Dalton
Jane L. Daly
Kayla Deal
Annamarie Dean
Ann Derouen
Kathy Devlin
Jan Diamond
Dennis Feinstein
Marilyn Findlay
Dorian Fisher
Anonymous
Donors
Gary Alcorn
Robin Batra
Howard Berg
Gwendolyn Berger
Tom Birkholz
Mary Blood
Michael Blum
Philip Bodner
Leah Brasch & Daniel Koch
Brasch
Marla Bronstein
Caryl Busse
James Byrne
Stuart Campbell
Wendy Carson
Cliff Carter
Stacey Chapman
Michael Charbonnet
Janette Chinnow
Irene Christodlous
Margene Coulter
John F. Craemer
Lois Creer
Edward Cronin
John Crute
Donald Cunningham
John Dardenne, Jr.
Andrew Davis
Gary Davis
Tim Dixon
Laurel Dorr
Susan Freyberg
Milton Geller
Lynne Goodman
Holly Green
Frank Grubbs
Jill Hecker
Maxine Hewett
Rose Hom
Dane Horna
Emily Jackson
Gail Kain
Elizabeth Kasper
Marlene Kazanis
Felix Kramer
Gavin Lambert
Ann-Marie Light
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Michael Logston
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Jamie Luzader
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Cynthia McDonnell
Lisa Miotti
Renee Moelders
Nikol Morrissey
Tara Paul
Ruth Perman
Barbara Port
Mary Price
Curtis Drake
David Duclett
Stephen Etkind
Paul Feigenbaum
Mary Fonner
Donna Lee Fowlie
Jill Frederick
Elizabeth Gamble
Carol Gardner
Robert Godzisz
Edward Goldberg
Jean Greer
Julie Gresack
Tammy Haddock
Ormond Hammond
Jerry Harnik
Barbara Harrington
David E. Heisel
Heather Homick
Randy Howard
Tony Howell
Eugene Hull
Jewish Community Foundation of Greater Mercer
Martin Kaiser
Mariam Kaplan
Arlene Katz
Kathleen Keats
Steven Kelly
Christine Kelly
Narayanan
Kulasekar
Kenneth Lahr
Judith & John LeNard
Limei Lin
Ann Lindenbaum
Laura Liss
William Litchfield
Carl Lofaro
Andrea Mack
Harry McCullough
Mark McLaren
Jeannie Meyer
Jim Morton
Frank Moseley
Herman Mullejans
Marcia Myer
Tammy Osborne
Terri & William Parsons
Michelle Passage
Richard Passler
Phyllis & Iain PearlBaxter
Deanne Pedroni
Jenifer Peischel
Michael Petillo
Betsy Poer
Mary Jane Polizzotto
Catherine Powderly
Robert Rahner
Pauline Reetz
James Robbins
Marilyn Rose
Richard Rothberger
Richard Ryon
Alan Sachter
Beverly & Richard Sanders
Anne Santorelli
Viktoria Schaub
Michael Schelle
Paul Selnick
Mary Ellen Semple
Lois Simon Charitable Foundation
Ronald Skow
James Smith
Barry Soroka
Phyllis Stewart
Stuart Tenhoor
John Thomason
Jill Tolle
Erik Toomre
Helen & Frank Vaccaro
Charles Vogel
Cynthia Waldman
Tom Wilk
Jill & Mark Winchell
Edmund Winter
Lewis Wirshba
June Wong
Randolph Worth
Kristina Yankeloff
Elissa & Ken Zaslow
Judy Reiss
Mary Rigsbee
Katherine Robinson
Stephanie Rommer
Blanche Ross
Elizabeth Runnalls
Eric Rzeppa
Marilyn P. Salchert
Phyllis Saltz
Judith Schooley
Bonni Silber
Douglas Sinclair
Carol Stanley
Ray Stolarczyk
Judith Tanenbaum
Ellen Taranto
Susan Tedter
George Thorne
Linda Tillema
Steven Tornberg
Valerie Trim
Bernard Tyler
Robert Vance
Jannifer L. West
Michelle Woods
Nicki Woolsey
The ANA would like to thank the following donors, who made philanthropic contributions from July through September 2022, who were not included in our previous issue of NOTES:
Randall Berger
$2,000 in support of our Research Challenge
Tracy and Marc Schwimmer
$1,250 in support of our Research Challenge; and $150 in support of the ANA General Operating Fund
We sincerely appreciate your support!
ANA DONORS ($100-$249)
ANA FRIENDS ($50-$99)
IN HONOR OF
ANA Volunteers
Marla Bronstein
The Bornholdt
Family
Andrea Mack
Meredith
Mueller Daly
Denise Velez
Armijos
Kathy Devlin
Broadridge Foundation
Cynthia McDonnell
Virginia Fickel Ehr
Marilyn Rose
Stuart Tenhoor
Garrett Harshman
Mary Ellen Semple
Hayden
Matthew Hessler
Julie Gresack
Laurie Hultman
Nikhil Joshi
Janice Kopec
John Catalano
Samantha Lambert
Gavin Lambert
Joe D. Lewis
Michelle Passage
Karen Marie Lonergan
Samantha Rollins
Dr. Thomas Sattler
Elizabeth Gamble
Dr. Friedman, Schwartz and the rest of the AN team at UCSD
Adam Hermsen
Dr. Sunny Sharma
Edward Goldberg
Scott & Julia Sittig
Kaela Sittig
Mary Spinks
Anonymous
Macy Tyler
Laura Kaschmitter
Kathy Larocco
Annamarie Dean
Phyllis Stewart
Hallie Wilk
Tom Wilk
Graeme Woodworth, M.D.
Paul Selnick
Joseph Yankeloff
Kristina Yankeloff
CORPORATE MATCHING GIFTS
Abbott Laboratories, EGC for Paul Collins
ADP, Inc. for Katharine Bohnenberger
Kevin Robbins
American Express Foundation for Joy Burden
Holly Erickson
AT&T Corporation for Anonymous
Eric Nelson
Chevron for Barry Abbott
Costco for Anonymous Dell for Anonymous Google for Anonymous
Gordon Brothers for Meredith Mueller
Daly
Hartford Fire Insurance for Cathy PokornySlater Intuit for Christy Nicholson
ITW Corporate for
Craig Simon McKesson Foundation for Terry Bliss
Microsoft Rewards Give with Bing for Anonymous PepsiCo for Donna van Gennep
Raytheon Technologies for Robert Landis
IN MEMORY OF
Gerald Nyeff
Abraham
Alfred Bove
Kevin Boris
Jamie Luzader
Amy Marlene
Grossman
Jewish Community Foundation of Greater Mercer
Sharon Kaplan
Phyllis Fried & Steven Goldenberg
Arlene Katz
Ann Lindenbaum
Phyllis Saltz
Elissa & Ken Zaslow
Sherrie Lynn
Kofsky-Weinstein
Dr. Walter Weinstein
Hazel Thompson
Betsy Poer
Reena Yonkosky, M.D.
Melanie Hutchins
FUNDRAISERS
AmazonSmile
Walk4Hearing
Connecticut
FUNDRAISING
Diana Bates
Cisalie Bechen
Jo Anna Brock Sizemore
Lupita Dejesus
Alison DePetris
Deb Hunter
Leslie Hyman
Mary Anne Kuhn Marquez
Nikki Lacobie
Kristi Lake Ferguson
Pamela McGehee
Edit Muhari
Yvonne Ocasio
Dana Patterson
Alana Quartuccio Bonillo
Dawn Raimondi
Mittendorf
Jane Rioux
Darielle Ruyle
Kirsten Schmidt
Diane Wescott
Ways to Give to the ANA
When you contribute to the ANA, you play a critical role in supporting the programs, activities, and events of the Acoustic Neuroma Association. You become a partner in our mission to continually improve the lives of acoustic neuroma patients and their families through communication, support, innovation, funding research, and partnerships with the medical community.
THERE ARE MANY WAYS FOR YOU TO CONTRIBUTE TO THE ANA.
• Online or Mail-In Donations
• Matching Gifts
• Gifts of Stock
• Planned Giving
• Giving Partners
• Fundraise for the ANA
SUSTAINING DONORS
Anonymous
Cody Cooper
Charles Delascasas
Lewis Erickson
Reva Greenbaum
Elizabeth Kasper
Renee Moelders
Bonni Silber
Vijesh Unnikrishnan
LEGACY SOCIETY MEMBERS
Anonymous
Jeffrey D. Barr
Sally Brock
Neil D. Donnenfeld, MBA
Virginia Fickel Ehr
Agnes Garino
Lauren & Alan
Goldberg
Miriam B. & Joseph Klein
Christine Larsen
Patricia Lupica
Kerri & Ronson Mahla
Dana McEntee
Jethro Montzka
Eileen & Fred Nervo
Phyllis Pearl-Baxter
Wanda D. Price
Glen Rivara
Kathleen Rogers
Marilyn Rose
Kimberly J. & Wayne A. Simington
Jane F. Simonds
Mary F. Snyder
Michael Stiller & Cynthia Fabian
Stuart TenHoor
Gail Toalson
Martha Toloudis
Scott Van Ells
Robert Vance
Robert Westerbeke
Lisa Wilder
John Zipprich, II
Make giving easy by becoming an ANA sustaining donor. It’s simple to set up recurring payments that make giving convenient for you. To learn more, visit anausa.org or call us at 770-205-8211.
For more information, please contact our office at 770-205-8211 or Matthew Balte at matthewbalte@anausa.org
Together for Better
Acoustic Neuroma Association
600 Peachtree Parkway, Suite 108 Cumming, GA 30041
770.205.8211 editor@ANAUSA.org
Jim Shea Chief Executive Officer
ANAUSA.org
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